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Adult suvivors of Rhesus Haemolytic Disease

I agree that there is very little information about this condition. I was born with it and apparantly spent 2 months in an incubator. I would like more information on possible life long problems as a consequence of having this disease in infancy.

I am 34 and have suffered all my life with low immunity, fatigue depression and anxiety and general ME like symptoms. I suspect there is a connection.

221 Replies

  • boobooki boobooki

    I am a rhesus - mother, pre pregnancy with my son i had an ectopic pregnancy so am pretty much convinced i was sensitized, i then fell pregnant with my son, i carried him as normal until approx 6 months, then he stopped moving, so as a concerned parent i went into the hospital, they put a heart rate monitor around my waste and told me :hes just a lazy baby!

    then my midwife got concerned as he seemingly was not gaining weight, again she just said : eat more pasta.

    I was not given any blood tests apart from 12 week routine test, and was not made aware of the results.

    i went into spontaneous labour at 37 weeks and had my son 4 pound 11 ounces- very small even for 37 weeks, it was deemed that my placenta had possibly stopped working, i did not receive any blood test after my sons delivery and was not made aware if a coombes test had been carried out.

    my son was born aneamic, with a hernia on his belly & didnt suckle and so could not be breast fed, he instead had my milk and then was fed for two weeks in hospital via an NG tube before i was able to ween him onto a bottle and get them to let us out smile

    he suffered terribly as a child, at first they thought he may be deaf but

  • boobooki boobooki

    passed his latter test? he has an alternating turn in his eye, is small for age, still has his hernia, has lax joints throughout his body- apart from his knees where he has shortened tendons- this only found after i requested a second opinion physio appointment after he was suffering from extreme pain in his knees.

    I absolutely feel like i am banging my head against a wall, THEY (the NHS) are assuming my son has a 'chromosonal abnormality' and are very much on my back about having him enrolled on a Dysphering development disorders study (thousands of pounds of tax payers money) so i sent them a letter asking them to use his blood that they already have just to test my theory that in fact my son has rhesus disease, his consultant shurugged off my concerns saying "i dont think that plays any part here" and now his genetist has completely fobbed me off sending me a letter 8 weeks after my initial query stating "i do not think that rhesus incompatability can explain ************* problems but i can understand why you asked us to consider this" well if they can understand why will they not test my sons blood???

    i have contacted every department my son has ever been to throughout the nhs asking them if my sons blood group is on their system and they all say they do not have it! now surely if a coombes test had been carried out surely they would have it on record? so did they even carry that out?

    It is also worth noting that, my son as a child suffered from seizures and muscle spasms, which were dismissed until he had a muscle spasm infront of his developement check consultant, and so i have it in writing that they saw this and dismissed it.

    My sons consultant also blatantly told me that my sons blood test results had come back absolutley fine, then when i received a letter she had written to his genetist about the appointment she goes on to say his ferritin levels are borderline- so borderline aneamic then!!!!! but didnt even think to tell me this so i could as a good parent up his iron content.


    they are all very hush hush about it, and wont oblige to just letting me know what my sons blood group is.

    as a child did you have a blood transfusion?

    have you heard from anybody else with the same as yourself?

    what are symptoms in later life? as i am trying to do all i can for my son but feel i am getting no help.

    • christine64233 christine64233 boobooki

      How are you getting on with your son? I hope that you are still looking at this forum as I think things are moving in the right direction. I am sure that there are more RH affected younger people out there who like your son and my daughter were 'overlooked' or not dealt with in utero or soon after birth.

      Let me know your son's other symptoms if you wish, and we can see if there is an overall pattern, as seems to be emerging. I wish you well. 😀


    • adag adag boobooki

      I was born in the early seventies with RH disease.  I also had an alternating eye turn until it was corrected by surgery in my 30s.  I've struggled with anxiety and depression for most of my life.  I'm just starting to research the impact of RH disease on adults.

    • adag adag

      I had a blood exchange procedure when I was a boy.  My mother used to say:  "they had to change your blood out one teaspoon at a time."  I was in the incubator for some time before I could go home.  They said:  "You were a very sick little boy."   Seems like we really had to fight to come into this world.

    • katherine88455 katherine88455 adag

      I'm glad I found this forum. I was an RH baby as well as my brothers and sisters. We were all given blood transfusions at birth. We all are "different". One of my brothers is deaf and severely autistic(they considered him retarded back in the day, but now we think he is autistic). My siblings and I have all struggled with anxiety and depression as well. I came to the internet this morning to see what the long term effects of being an RH baby(of the 50's) were. I was wondering if my irritability and short term memory problems and inability to concentrate were due to my Mother's blood trying to kill me! My dad is practically a genius with super memory at 87 and my mom was a chemist with a 6 year degree from Berkeley. None of us kids ever did that great in school or in our life work. My sister has serious RA. My other sister is manic with a little depressive in there. My little brother had learning disabilities also. He died at 53. My big brother died at 53 too. This is all very interesting to me. I feel relieved that my inability to concentrate and remember things might be due to months of attacks on my blood in utero.


    • tra10297 tra10297 adag

      Hi i too have the same illnesses as you. My mum who is RN didnt get any injections while she was pregnant with me and i also have my dads blood group O positive. Is there tests you can do privatly to investagate this . Reading what others say here i seem to have a lot of the same health issues that has gotten worse from teenage years. I too had a notion a few years ago to try to investagate this when my daughter was having her firstborn and her blood is RN. She had to get a few Anti-D injections and my mum is insisting my illnesses are because she didnt get this injection. Also i live in Northern Ireland and back in late 60s-70s in Ireland there was something wrong about this whole RN and this injection. Its good to know a few others are also quering this. Thanks.

      I did copy and paste my text of the above to a few people on this site. I would be very intrested in knowing did you come to any conclusion with your investagation.

  • christine64233 christine64233 Guest


    I am the mother of an officially undiagnosed 32 year old. She was my second child and I was advised not to have any further children. In spite of my daughter having jaundice in the first week of life and knowing that my anti D labels were very low, no transfusion was recommended and no real monitoring of my daughter took place. The result is that she has always struggled with life....regularly tired, difficulty with school and getting on with her peers, IBS, panic attacks, anxiety, poor muscle strength, poor sustained attention, more recently OCD traits. She is a lovely girl who just wants to live a normal life. I feel that if she had been monitored properly at birth, all of this would have been avoided and she would have been able to live an independent life like her elder brother.u

    • selina26483 selina26483 christine64233

      Hi I am a rh negative mum to a 18 year old daughter who did get light treatment with jaundice, when born .

      Her noticeable problems started at high school age 13 , just as you described , she never attended high school 90 persent of the time. A pediatrision thought she could have Gilbert's syndrome , never confirmed but did say a genetic test could be done to determine it , anxiety problems , and I have been wondering if any autistic traits could be what's up ,

      She was diagnosed at 15 with a hearing loss . ( had all life)

      During this time she had high billirubin readings but ignored and more recently anemia , I am still racking my brains why this has all happened why at puberty would this all happen , I will continue to look for reasons as my daughters future has been robbed and no one takes it seriously and finding it more difficult to get help for her as she is 18 now . I just thought everything you mentioned were too similar and hope you and your family are doing well but I think this is a battle worth fighting about for the sake of our suffering kids .

      Regards Selina

    • shay72273 shay72273 christine64233

      Wow I am an undiagnosed 35 year old.  I have spenth the last 7 years trying to figure out what was wrong with me.  The doctors thought I could have an auto immune disorder but nothing panned out.  But I have had all of the described traits with exception of difficulty with school, possibly because my OCD was being a perfrectionist lol.  But U have issues with my joints, IBS and have suffered from panic attacks through out life.  I also suffer from extreme fatigue.  All of thes issues got worse with age.  I have learned to manage and have maintained a job.

    • tra10297 tra10297 shay72273

      Hi i too have the same illnesses as you. My mum who is RN didnt get any injections while she was pregnant with me and i also have my dads blood group O positive. Is there tests you can do privatly to investagate this . Reading what others say here i seem to have a lot of the same health issues that has gotten worse from teenage years. I too had a notion a few years ago to try to investagate this when my daughter was having her firstborn and her blood is RN. She had to get a few Anti-D injections and my mum is insisting my illnesses are because she didnt get this injection. Also i live in Northern Ireland and back in late 60s-70s in Ireland there was something wrong about this whole RN and this injection. Its good to know a few others are also quering this. Thanks.

    • tra10297 tra10297 christine64233

      Hi i too have the same illnesses as you. My mum who is RN didnt get any injections while she was pregnant with me and i also have my dads blood group O positive. Is there tests you can do privatly to investagate this . Reading what others say here i seem to have a lot of the same health issues that has gotten worse from teenage years. I too had a notion a few years ago to try to investagate this when my daughter was having her firstborn and her blood is RN. She had to get a few Anti-D injections and my mum is insisting my illnesses are because she didnt get this injection. Also i live in Northern Ireland and back in late 60s-70s in Ireland there was something wrong about this whole RN and this injection. Its good to know a few others are also quering this. Thanks.

  • jenny92300 jenny92300 Guest

    U probably won't ever see this but I hope u will. I spent a month in an incubator 50 yrs ago... I had 5-6 blood exchanges - my parents never made a big deal about it but my mom told me she feared my depression was from being so sick in-utero and after. My mom passed and then I got real sick a couple years later with broken bones-osteoporosis- anemia the doctors couldn't figure out why... Plus many other debilitating illnesses leavings unable to work. My dad - in the midst of losing his wife and seeing me go from an active mom working full time and physically active to being horribly disabled... Said "the pediatrician said this may happen in ur Middle Age". What?! I get my parents saying nothing to not give me like placebo effect... I already had depression anxiety and multiple bowel issues that we were told were abnormal /genetic...


    I believe a dr in the 60's said I'd have trouble given their own medical knowledge and history - but I'm on disability now! So ashamed! And I know what my dad finally revealed to me... Comments?

    I don't drink pop, I eat well - fresh vegetables, lots if proteins and vitamins - yes I ate fast food when desperate while working 40-50 hrs a week. But my friends bones aren't breaking and they aren't anemic and in pain daily and osteoporotic before menopause!!!!!

    • christine64233 christine64233 jenny92300

      So sorry to hear about your difficulties. It seems that no one in the medical profession accepts the symptoms of rhesus disease in those who  have been affected. My daughter suffers too and obviously the prognosis is not good for the future. I do hope that you are getting as good treatment as possible to help with anaemia and pain. Don't be ashamed about disability, it is not your fault that you have health problems and you have obviously been a 'worker'. Take care.

    • jenny92300 jenny92300 christine64233

      Thank you Christine,

      I hope your daughter is okay - how old is she? Please tell me more if u will? I am fortunate to have a good group of doctors... But they don't have any diagnosis... Only symptoms they each are treating. I believe that since now the medical community can usually treat RH disease before it becomes a problem... (Or they think once the child survives then there will be no long term problems) ... That there is no money in doing research and/or treatment. Sadly money and potential money seems to be the driving force behind any type of research. I do hope your daughter is okay and please let me know. Thank you, Jennifer

    • sherry22637 sherry22637 jenny92300

      Hi Jenny;

      I can relate to much of what you posted.

      I was born by cesarian section five weeks early becasue the RH disease would have ended my life in utero if I was not born early.

      I received three complete blood exchanges and spent five weeks in an incubator. I always knew that my immune system wasn't up and working as well as others. I seemed to catch every cold, flu or virus that went around and was always sick for much longer than other people with these things. Other than that, my eyesight was severely affected by the straight oxygen that was given in incubators 50 years or so ago. I have 20/40 vision in my right eye and 20/50 vision in my left eye. Still.. I was always grateful for my eyesight as many in the same situation either did not make it and if they did, they were quite often blind.

      As a person in my fifties, I have noticed many odd things that caused me to begin searching to see if my rocky early start, could have contributed to my increasing health issues. I've always been ultra active, a runner, walker, skiing and more. I am a healthy person that chooses to and loves eating healthy meals. This has always been a priority for me.

      I now have one pupil that will not dilate. It's tonic and causes me a lot of problems that add to my already difficult vision issues. I'm very light sensitive and driving when it rains is just a blur.. so I no longer drive in those conditions. Sunlight is blinding.. even with sunglasses.

      I've had so many surgeries that I've lost count. Everything from female problems that caused me to have a hysterectomy at 30, bone problems in my hand requiring surgery, a mass in my right arm pit causing the removal of the axilary lymphnode, acchilies tendon problems that are leading me to surgery soon and much more. It just seems tha when an injury happens, it doesn't heal.

      I have now had a really bad cold, cough and sore throat since December 30th. My immune system doesn't seem to pick up and do it's job.

      While having my tonsils removed as a child (I had one tonsilitis attack after another), I hemoraged and almost lost my life.

      I've also been on the verge of hemochromatosis ... where the body holds on to iron in the organs... but now when I'm tested, it doesn't seem to be a problem and I haven't had treatment.

      I have a severe gluten allergy and have had to go on prednesone many times when I have mistakenly injested gluten. My body can't handle it at all.

      Anyways.. It's odd to write about these problems and conditions.. I've just taken them in stride but now that I've found this forum, I'm more curious than ever if it is due to my rough start in utero and in life. It has always seemed weird that I can live a totally healthy, active life and eat very well and still have so many issues.

      Thank you for letting me vent. I was drawn to your post because we are in the same age group and I see that you are truly struggling as well.

    • katie63328 katie63328 sherry22637

      I know this is an old thread but I have been desperately searching for something to connect my dots and many things you described about yourself are me!

      I am 38 all I know is that my mother an I had RH compatibility issues, she says I was a miracle baby who had blood transfusions right after birth. My older brother was not so lucky and was stillborn. 

      No other medical record exist but I too was sick a lot growing up, severely underweight. But by my 20’s I was pretty normal and healthy. 

      In my 30’s however I had thyroid cancer, gallbladder removed, iron storage issues (too much iron), major pregnancy compilations (both kids are fine though) lots of other autoimmune issues. 

      Ugh. Glad to know I am not the only one!

    • rhonda62884 rhonda62884 katie63328

      Katie...your a lucky girl and must have asked God to Quide you cuz I just found this information last night!!

      US babies were born with compromised Immunoglobulin G (IgG) this results in HD which in adults is Cytotoxic Hypersensitive! !

      It appears to be treated by allergist.

      It is similar to Mast cell disorders.

      You've got a damaged Vagus nerve if galbladder is gone so you'll need supplements but there is a light at the end of the tunnel!!

    • katie63328 katie63328 Kensdoll

      My primary care dr is an MD and an OD and is very aware/knowledgeable about this area. I had blood testing done for the food allergies through him. I had patch testing done at my allergist for chemical/contact allergies and scratch testing to confirm my true allergies to food/environment...

  • christine64233 christine64233 Guest

    Hi Jennifer, my daughter is now 33 and as such, I think she is very unfortunate to have been 'overlooked' in terms of not being properly treated in utero or post birth. Blood tests taken after my anti-D injection after my first child (not administered properly as I felt liquid at the site) revealed that the anti D had not done its job and as such, my daughter should have been closely monitored especially when she developed jaundice soon after birth. She was quite lethargic as an infant and has had poor muscle tone all her life, plus bad I B S etc.etc. It affects every part of her life. It is such a shame that the medical profession seem to have no understanding or help for RHDisease affected people even if there are very few affected. I assume it is all too late now and that like you, individual symptoms are medicated but that is it.

    Take care.

  • jenny92300 jenny92300 Guest

    I'm so sorry to hear about your daughter. I believe that Drs. Believe that transfusions etc are common and that it is a treatment without repercussions (other than when they didn't test blood for HIV/Hep B, etc). Also the symptoms seem to be attributed to other problems... No one has connected the dots that symptoms maybe clustered and be traced back to birth. I wonder about the damage done to the fetus when there is insufficient iron and blood supply to a growing baby??? Also - I've recently been diagnosed with a bacterial infection in my small intestine that mimics IBS. I've been told I have IBS and my last Gastro said I don't have IBS bc I wake in the middle if the night and go to the bathroom for hours... Despite the symptoms are similar to IBS. Night waking is not one of them. Anyway - I did a 4 hour breath test for bacteria and it can be linked to birth. So just a thought for your daughter. This infection causes aplastic anemia and not absorbing nutrients.

    Good luck and god bless


  • rex92285 rex92285 Guest

    I am a 59 year old male who was born with RH disease. My mother was actually warned not to have another pregancy after my two older sisters were born. She really wanted a son so she took the chance and ended up having me. I apparently had two complete blood transfusions within the first 48 hours of life. I have had  numerous health issues since the time I was young and always wondered what effect my having the RH was having and has had on my health. The physical issues are too many to list but in terms of psychological problems, I suffer with depression and extreme anxiety which I am taking medication for.

    • jenny92300 jenny92300 rex92285


      I'm very interested in what you describe. I'm sorry for what you are experiencing. I don't know what you read about me, but I am 51 and had 6 blood exchanges (emptying out all my blood while introducing new blood) soon after birth. I was taken a month early or Told I would have died and then wasn't touched for about a month. I have depression and severe anxiety as well. I have recently ended up on disability because of all the multiple medical problems I began to have. I cannot find any medical literature on RH and long term problems. My father finally told me - after I began experiencing so many obscure medical situations that made no sense - that my pediatrician said when i was discharged from the hospital as an infant - I would most likely begin to develop medical problems in middle age. I look forward to hearing more from you. Take care, jenny

    • rex92285 rex92285 jenny92300

      Hi Jenny,

      I'd be more than happy to go into more detail about my experience with RH. As I said in my earlier post, I was a child that in all honesty probably shouldn't have been conceived, at least that is what my mother's doctor warned her before she attempted another pregnancy after my ywo sisters were born. This was 1957 before medical technology knew how to properly deal with RH inutero. The only thing I know for sure is that I had two full blood transfusions within the first 48 hours of life. In kindergarten It was discovered that I had moderate hearing loss in both ears which is, from what I understand, a common ailment with RH babies. When I had my tonsils removed at age 5 the doctor also removed my adenoids which helped with the hearing loss but did not eliminate it completely. I had an unusual number of ear infections as a child and even into my 30's. Two of them so severe that my ear drum ruptured. as an adolescent, it was discovered that I had a bulging disc in my neck that through the years caused anything from a slightly sore, stifff neck to near paralysis of my left arm.That was followed by a severely bulging disc that left me temporarily unable to walk. As the years went by I had more and more health issues. ADHD that went undiagnosed until I was in my early 40's which looking back on was the cause of learning disabilities despite the fact that I had a higher than average IQ. I will try to list all of my medical issues in chronological order. A severe staff infection when I was about 11 years old that left boils on my backside and left me bed-ridden for an entire summer. Mild depression that worsened as I grew older and a generalized anxiety disorder(GAD)that developed soon after the depression and joint problems with my right elbow and both shoulders. Starting in my late 20's I started having issues that are normally associated with people that were 30-40 years older than I was. Hemorroids, hernias, diverticulitis with occassional flair ups of diverticulosis, hip pain which is probably arthritis. Tinittis, or constant ringing in both ears, Angioplasty with the placement of 5 stents when I was 47.  Maybe the worst of all is bi-lateral neuropathy of the pudendal nerve(you may need to do some research on this one,It's a very cruel disorder.) High blood pressure, type 2 diabetes, COPD, a recently diagnosed melanoma on my right shoulder that was successfully removed, GERD that has left me with a pre-cancerous condition in my esphagus called Barretts Syndrome and I'm probably forgetting a few more. I have been curious for a number of years now if any or all of these conditions are a direct cause of my RH. Finding this forum and seeing others who have multiple health issues has raised my curiosity even further. I'm also wondering if my mother has told me everything about my birth and any complcations there might have been in addition to needing the blood transfusions. I'll have to ask her one of these days.

    • jenny92300 jenny92300 rex92285

      Wow Rex - I have to tell you I am so sad to hear about all you've been thru. I was only the second child of my mom's with RH - my brother was born 15 months earlier and started the whole thing... Which I guess prompted the amino for me which mother said was one of the first ever done and they took me by Caesarian the same day.

      My medical problems include having a crappy bowel pun intended - diverticulosis diagnosed at 20 and being told I have the bowel of a 50 year old. I have ended up with multiple episodes of diverticulitis in late 30s and 40s with perforation colostomy reversal etc. I have been diagnosed with soft bones and with osteoporosis at about 40. I have arthritis thru out my body. I've broken my femur both hips my foot my finger all from really nothing. I have hypoglycemia where I can faint if I do too much without eating but I have chronic diarrhea which isn't IBS, which causes me unable to eat. Just last week I had what the drs think was a TIA - (couldn't talk or walk but was lucid) but my heart tests all r fine but my blood pressure can sky rocket then be back to good within 12-24 hrs with no medicine. That night I had super high BP tachycardia and palpitations. They still sent me home in 24 hours.

      Anyway - yes very weird. I'd really like to keep comparing notes and thoughts about this. Btw my mom got pregnant after having me and was told the baby had little chance to survive 50/50 best case - he sent her for an illegal abortion. So sad.

    • christine64233 christine64233 jenny92300

      Hi Jenny and Rex, I have been watching your discussion with interest on behalf of my 34 year old daughter. As I mentioned earlier, she was my second baby and I am a Rhesus negative mum whose anti D injection was not properly administered and she was not properly attended to (no transfusions etc) even though the medics knew I had developed rhesus antibodies and therefore the second child would be affected.

      She has serious gut issues/ abdominal pain and is always bloated with what has been generally diagnosed as IBS. She shows signs of stress and anxiety and has developed OCD issues for which she takes meds. Her ankle often hurts and she is always tired. Unfortunately, unlike her high flying brother, she is not confident or academic and will find it hard to cope when her Dad and I aren't around anymore. Reading your symptoms does not fill me with hope for her!

      There seem to be very few of her generation affected and no one seems to accept the cause of all these difficulties. 

      Did you find it hard to relate to your own age group, I wonder? Do you sometimes, although trying to be kind, say inappropriate things? And have you found it hard to stick at and organise yourself in tasks? I am wondering if these are typical RH disease symptoms?

      Thanks and I am praying for you.

    • jenny92300 jenny92300 christine64233

      Hi Christine,

      I'm sorry to hear about your daughter. I don't know if there are typical RH symptoms bc I have not found anyone except thru this forum. I would really like to develop a list to compare and contrast.

      What you describe about your daughter reminds me of me... It could be many other things until we recognize most are shared by RH babies. I have a pretty high IQ which I share with my father and his family. I have depression and anxiety which I sadly share with my mom's family. I do say 'the wrong thing' like I have no filter sometimes. I have as you have read multiple weird medical problems. The way I see myself right now is a 51 year old woman who was vibrant and active etc then at about 40 my medical anomalies I'd had actually began effecting my life. Diverticulosis became diverticulitis. Chronic pain and inflammation became fybromyalgia and body wide osteoarthritis with a few broken bones thrown in for osteoporosis. Now my heart palpitations turned into a TIA and I'm back seeing a cardiologist. Like my internal body is at least 25 years older than my physical chronological body. I have old lady diseases.


    • rex92285 rex92285 christine64233

      Hi Christine,

      So sorry to hear that your daughter is suffering. I hope that somehow, someday she'll find some relief. As for the questions you posed in the last paragraph of your post, I have to say that I can answer yes to all of them. Prior to relocating from my hometown of almost 45 years I had maybe 2 or 3 people that could call good friends. After moving, I had very little interest in meeting new people so I basically became a homebody. As time went by I did make new friends and aquaintances but everyone I socialize with now are a good 20-30 years younger than I. I'm also very impulsive when I converse with others which sometimes leads to me saying inapproriate things. And although never a really organized person, it seems that my ability to focus and stay on task is getting worse. There could be likely reasons for all of these other than being affected by RH as I do have A.D.D.

    • rex92285 rex92285 jenny92300

      I knew I was forgetting a few things in regards to health issues. I started losing all of my tooth enamel about 15 years ago resulting in in dozens of cavities and fillings. Just recently had to have all of my teeth crowned in an effort to save them. Then just last year I came very close to dying from septic shock that was brought on by complications with gall stones and the almost complete deterioration of my gall bladder. So, yeah...theres that too. cry

    • paige74028 paige74028 rex92285

      Hi Rex,

      Wow. You have been through so much. Wishing good health for all of us. I just responded to Jenny's post about dental problems.  She has suggested we compile data of our symptoms. I think it will be really revealing as we just have too much, unfortunately, in common. Hope you are doing well today. Take care smile

    • rex92285 rex92285

      You know, I just had an interesting thought that I'd like to share with our forum members. I tried Googling "The effects of low red blood cell count on fetal development." and although I didn't really find much, what I did find out was pretty interesting and just might explain some things. Like I said, not much on what I was looking for but in the search process I ran across some information about Mother's anemia during pregnancy. It would appear that the medical profession has a pretty good handle on the recognition and treatment of this disorder because of the fact that there are outward signs of it and the ability of the mother to comunicate some of the more subtle symptoms that might not be so obvious, even to the trained eye. But what about the fetus? They are obviously unable to vocalize to doctor what they are experiencing. Although not technically termed fetal anemia, the effects of RH are quite similar to the unborn baby. Lack of sufficient red blood cells and subsequently the oxygen they carry to such. It has been well established that the lack of oxygen rich blood can cause brain damage to the unborn child. What I haven't been able to establish if that same condition can affect other aspects of development as well. I am specifically referring to the development of things like all of the other major human organs, connective tissues such as ligaments and tendons and other things I might not be thinking of. Would it not make some sense that the lack of or more specifically the partial depletion of oxygen(and possibly iron that is also a function of red blood cells could cause a multitude of issues with fetal development? Maybe this is why so many of us have so mcuh in the way of similar health issues. Just a thought.

    • cynn cynn rex92285

      Hello Rex, I am a new follower of this as of today.  My mother was Anemic while pregnant with me.  I am the second born of the three to an Rh neg mom.  I was slow, with a high IQ.  I was sick all the time and no one ever said much to me, as being a genetic misfit was an embarasement in the early 60's.  My sis 2years younger was completely retarded and had numerous seizures a day.  The Dr. made her a ward of the state as my mom was not equiped to handle all of her medical needs.  my mom was devestated!  my older sister became incresingly introverted and my mom withheld all info of this to me.  she felt if I  knew I was sick i would give up...well, I too was active and had many reoccuring infections, and migraines.  when i neared 50 I fell and broke 3 ribs and they never healled.  since then I am found to have anemia, but not iron.  vit. B, D and C...also low immune system, cronic fatique, 

      SAD, sleep Apnea, Cronic sinus infections, arthritis, asthma, high BP, IBS w contipation and severe allergies.  I also have in our family...EDS and  get un explained enlarged Liver!  well now I know why!  I know it progresses.  I can barely tolerate wheat now.  and milk is a constant problem.  I feel for you Rex!  I hope you find some thing of use here.  I regularly take extra vit B andC,  plus perscription Vit D 25000.

      good luck!  i am amazed at your research into this !  continue on... did you see now on Ancient Aliens show on nat geo, says people with the  Rh neg trait are most likely from another planet!!!!!  others suggest we are from an ancient peoples who are angles desinded onto earth!  hahahahahaha....but what we are is....DETERMINED!  to push for more research! and education of DR's!!!

    • katie63328 katie63328 christine64233

      I am very much like your daughter. 

      I’m 38 but had blood transfusions when born and a ton of health problems. 

      Interested though you mention the organizing, saying inappropriate things, feeling out of place with people etc. 

      I was recently diagnosed with adult ADHD  - a lot of these traits are similar to  female adults who went undiagnosed with adhd. 

      I am glad I am no alone in struggling with all of this...

  • paige74028 paige74028 Guest

    Hi everyone smile

    I'm 47, will be 48 soon, and the first Rho(D) immune globulin was approved a few months after I was born. I am the second child, and I was induced two weeks early and given exchange transfusions the first day. Everything went well for the most part physically, and I only had to stay in the hospital for several extra days. I do however suffer from severe ocd and panic and anxiety. I've just started thinking that perhaps there is a connection btw the rh issue and the ocd etc.. I'm thinking maybe as was suggested by Jenny that our problems are in fact from being ill in utero. Finding your similar experiences is really eye opening. Has anyone found any research on studies done about adult survivors of rh disease?   I don't get the impression there are a whole lot of us around as it is well treated today and the prognosis before rhogam wasn't too good. Maybe I'm wrong about that. Just wanted to add my experience. It's nice to meet you all.

    • jenny92300 jenny92300 paige74028

      Hi everyone,

      I agree with Paige that there isn't enough research. My philosophy is there is no money in it to do research and from what I've read most RH babies did not survive except during our maybe ten year window when they did amino/blood exchanges/etc. Babies that did survive had low muscle tone.

      I think being under so much stress in utero coupled with the stress of being born so seriously I'll would absolutely effect our hippocampus and therefore our ability to successfully manage things as successfully as our peers. This maybe why so many if us have anxiety depression OCD etc. It's sad but maybe how we cope when our brains aren't built right from pre-birth.

      Of course I could be completely wrong - and maybe the result if needing to cope with multiple weird illnesses.

      I'm glad we have this group to validate each other! What we have is not our fault but as adults we 1. Need to help ourselves and 2. Find answers so maybe we can find some relief.

      I saw a cardiologist yesterday and said "I feel like a fairly young woman who has old lady diseases." Like my internal body us just wearing out😞.

      Being a once physically active vibrant wife and mother sometimes just climbing stairs causes me to have to sit and take a breath. I weigh 110. I do get angry at what life has dealt me but now I don't feel alone.

      Thank you


    • christine64233 christine64233 jenny92300

      Hi Jenny and all, you are not alone, even if it feels like it sometimes. I spoke to a G.P. (doctor) after church this Sunday and he was telling me about his young daughter who had hearing problems so I mentioned my RH adult daughter and in passing, he said that it still happens (just that in my experience, when you are in the doc's surgery, no one takes us seriously or admits to it)!

      Let's keep sharing 🙂

      Low muscle tone and therefore ability to join in different kinds of physical activity classes, has always been an issue for my daughter......

    • paige74028 paige74028 jenny92300

      Hi Jenny,

      It's amazing the amount of illnesses that we all have in common. I had no idea, until I just starting researching, how many RH babies didn't survive. We really are a minority. I have found a few studies that were done in the 60's and 70's that were follow ups on Rh hemolytic disease survivors, but I can't read them because I don't have a subscription to the databases. I agree with everything you wrote.The study, that was recent, about a higher incindence of schizophrenia in Rh babies stated that the hippocampus is vulnerable to hypoxia, lack of oxygen, from hemolytic disease. So I think you are correct in saying the hippocampus was probably compromised in our brains and that's why we are suffering from ocd, anxiety, etc.. These researchers just chose the schizophrenic population to study.  I wonder also if there isn't much current interest in studying the long term effects of Rh incompatiblilty because there aren't many of us, we are all middle aged, and in the western world it has long since been a concern. We aren't really on the radar? I'm really sorry about all that you are going through.  I have the same hope that we can at least get some answers/validation which will in turn bring some level of relief.  I just keep coming back to thinking, as you have said too,  how could we have endured the stress in utereo and not have problems? It's our first expericence. I'm really happy to meet you, and I wish we all felt better smile


    • christine64233 christine64233 paige74028

      I do hope you are ok today , Paige. you say that all RH disease patients are middle aged but as you can see from my posts, my daughter is 34 and has been displaying many of the same symptoms e.g. low muscle tone, anxiety, depression, inability to organise her life/ belongings well, latterly OCD etc.  for years now and this has blighted her social and work life completely. So I have a feeling that, if like her, the RH (D) immune globulin (antiD) was not administered properly or in time and that the follow up care was poor, there may well be others who have slipped through the net. 

      The affected hippocampus idea is interesting. Quite recently, a counsellor here suggested we try (privately of course)! a neuro-psychological assessment to see if my daughter's frontal lobe was affected which would explain the organisational difficulties but my daughter is so understandably fed up with assessments she doesn't want to do it even if we could find anyone reliable.

      Again, all of the symptoms are treated individually rather than being seen as a cluster of symptoms which I am now convinced are directly related to RH disease.

      Keep in touch as it is quite hard for us all, directly or indirectly, coping every day with a worsening 'condition' Receiving more information helps with understanding and to a certain extent, coping. Take care. 😀

    • jenny92300 jenny92300 paige74028

      Thanks Paige for your reply! 😊

      I would like to see if there are other medical conditions we have in common as well. I know there is a brain/gut commonality and I read from others about a lot of IBS issues... I have major problems thruout my bowel, not IBS, which can be debilitating. Also my early onset osteoporosis could be from lack of blood to develop my bones and my teeth are also horrible since my adult teeth came in at 6-7 years old. I have anemia as well.

      Anyway, as I mentioned it would be interesting and helpful to construct a list, (if participants are willing as it is personal) of all the medical problems we are coping with that, in my opinion, don't make sense.

      To everyone's health - I hope you all have a good Memorial Day weekend free of symptoms!


    • paige74028 paige74028 christine64233

      Hi Christine,

      I'm really so sorry for omitting your daughter and others in what I wrote.  I hadn't slept much the night before, and I was really exhasuted. Not thinking clearly from it I guess.  Please accept my sincere apology.  This is our place for support and hopefully answers.

      That actually brings up another symptom that I wonder if others have. I am a lifelong insomniac. I have even joked that  I haven't slept since the womb and probably didn't then either. As a child I couldn't sleep and I still can't. It was so bad when I was little that my parents told me that as long as I stayed in my room, they didn't want a child roaming the house in the middle of the night, I could get up and play or read if I couldn't sleep.

      I like how you pointed out that our symptoms are being treated indivually as opposed to a cluster related to rh. That's just what's happening, and it would stand to reason that we would get better treatment or results maybe if they were seen in that light. Again I'm sorry, and I wish the absolute best for your daughter and everyone here. We will get to the bottom of this smile

    • paige74028 paige74028 jenny92300

      Hi Jenny,

      I have had gi problems for pretty much my whole adult life also, and I am low normal on iron studies. Not officially anemic. I, like you and others ,have also had bad teeth. I remember a dentist telling me when I was younger that I was in the back row when they handed out teeth. A really dumb thing to say to someone, but he did acknowledge my dental problems from an early age. I'm completely on board with compiling a list of our symptoms to see what we have in common.  Happy Memorial day to you also smile

    • jenny92300 jenny92300 christine64233

      Hi everyone!

      I hope this note finds u and ur loved ones having a good day. I really appreciate all of the discussion and feedback we are having. Since I suggested we share our medical concerns I will start with myself. I completely understand if anyone chooses not to disclose their own history. My goal is that I want us together to see if there maybe any correlations that can be attributed to RH.

      A recap: in 1964 I was taken by c-section 4 weeks early and had 5-6 blood exchanges (not transfusions). I weighed 4 lbs at birth and was in the hospital for one month in an incubator.

      *I do not have poor muscle tone. In fact I was always a solid athlete who did everything I could to prove just bc I was a girl I could keep up with my brother who is 15 months older than me.

      *the following is a list of my diagnosis'




      Colitis (misdiagnosed as IBS for years)

      ADD (no diagnosis but I can't maintain focus or order, could be OCD? Idk)

      EVERYTHING is tiny - I am almost 5'1" 100lbs but my bones, teeth, nails all require child size care. If I get my nails done the manicurist uses all pinky nails for every nail cutting them smaller as needed) I wear size 1-2 and B cup so it's like all the nails/teeth/bones only. Oh- I need almost like child size sunglasses bc my face is so small. I wear a size 6-6.5 shoe American since having kids... I did wear a size 5.5-6 so that's normal.

      Early onset:

      Diverticulosis - at about 20 years old I was told I had the bowel of a 50 year old)

      Osteo arthritis thru out my body since my 30s

      Osteoporosis at 40

      Discolored teeth since adult teeth came in - mom didn't take tetracycline - now my teeth are cracking and being pulled 😞




      I hope this helps. There maybe more things I forgot but I wanted to start on compiling a list.

      Take care everybody!


    • moon41001 moon41001 jenny92300

      Hi Jenny, 

      I recently found this thread, I haven't posted here before, but I'm now 19. I don't know specifics but I know I was in an incubator and had several blood transfusions when I was born due to nearly dying because I had RH. I was a few weeks premature and I'm finding the fact that there are a lot of common medical problems among everyone and that I have a lot of the same problems. 

      I have:


      Depression (Although never formally diagnosed because I don't want to be medicated at that's standard pratice over counselling currently.) 

      IBS or some other stomach problem that isn't fully diagnosed

      I've had problems with my ankles and knees since childhood, again doctors don't fully know what's going on

      Scoliosis - although this problem may be hereditary and since this diagnosis my knee and ankle problems have been put down to this but they were present before scoliosis would have developed and have never stopped despite treatment. 

      I get frequent headaches and migraines that are so debilitating that I am bedridden when I get them

      Heart Palpitations 

      I haven't been diagnosed but I show symptoms of OCD and i've noticed and everyone around me has noticed that they are getting worse and more prominent in my life. 

      I also have Iron Deficiency Anaemia, which for my age is not caused by a lack of iron in my diet so I don't know the exact cause of this either. 

      The fact that a lot of my medical problems don't really have a known cause and the fact that I share a few of them with people in this thread makes me wonder if they are caused as long term effects of having survived RH disease, especially when the list seems too long to simply be coincidental.  It is really interesting how a lot of people seem to have these things in common and seems like there is a correlational relationship there to look further into.  I'm a psychology student so the mental health aspect really fascinates me and it makes me wonder how much research is actually out there and how much more does need to be done in this area, especially when it is such a prominent thing that is having a huge effect on our lives. 

      I hope everyone is able to cope and manage with their medical problems! And i'm glad I found this thread, it seems to answer a lot of question i've always had. 


    • rex92285 rex92285 moon41001

      Hi Moon and welcome to this forum discussion. I'm sorry you seem to be suffereing from many of the same symptoms that the rest of us on this forum are. I do have a question for you though. It seems a bit interesting that in this day and age of medical technology that it would seem that no background check on the blood types of your parents was done to rule out the possibility of RH problems. I'm don't have complete understanding of medical protocol for this "disease" but it has been my understanding that there are in-utero procedures in place to ensure that that baby is protected against the attack of blood cells that is the cause of RH problems. Was this done for you and your mom, but unsucessful or was it something the doctors overlooked. I think, in part because people like us are just beginning to possibly be putting 2 and 2 together, that we will be seeing more and more information about this subject and hopefully more followup studies being done that may help to unravel this great medical mystery.  Thanks for sharing your story with all of us.

    • christine64233 christine64233 moon41001

      Hello Moon

      I am the Mother of a 34 year old daughter with what I am now sure is RH disease. You will have read all my previous posts so will realise that all her symptoms mirror yours. You are not alone but we must try to get medics to accept that this is a condition and not a lot of unrelated symptoms and for there to be more understanding and genuine care for sufferers in the U.S. and the U.K. and elsewhere.

      I hope that you get some help and that things improve for you 🙂


    • jenny92300 jenny92300 moon41001

      Welcome Moon,

      I'm sorry you had to find yourself here😞, but I'm glad you did. I am SO surprised we RH babies have such similar ailments. I'm sure you read my thoughts on trauma in utero and ailments related to lack of iron from RH.

      I am a behavioral therapist and given my experiences and many training and conferences have met many Drs. From Massachusetts General, Boston, Harvard, etc. But at the time never linked my problems with my birth, so my questions focused on my work with BPD. Maybe in your ongoing training you can ask about any studies, as well suggest more research in RH. In my experience the Dr.s are always willing to listen and try to help. Let us know, as I've been referred to dr.s in my area and since we live all over the place, we can find someone who will be helpful.

      Good luck in your career! And I hope you keep us as a support/sounding board as well as updated if you get more info.

      All my best to you and to better health.


    • moon41001 moon41001 rex92285

      Hi Rex,

      I spoke to my mum about the possibility of in-utero procedures and she looked it up a little while after I was born and the treatments they have now were only put into standard practice a short while after I was born, and I don't know if my parents blood types were tested, but they did tell my mum it would be very dangerous to have another child after me.

      And i'm quite keen to look into this area myself, especially the mental health aspect and i'm planning to talk to my lecturers about the subject as a possible dissertation subject. I also plan to, in the next few years once I finish my undergrad, do a masters in Cognitive Neuroscience so would love to look further into all this, given i'd have the means to carry out the research.

    • moon41001 moon41001 christine64233

      Hi Chhristine, 

      There definitely does need to be some recognition, especially where the list of symptoms is so long and does have a large impact on all our lives. 

      I hope your daughter's symptoms improve, and wish you and your daughter good health, and hopefully sometime soon there will be some breakthrough that will make the medical community realise and in some way be able to help smile 

    • moon41001 moon41001 jenny92300

      Hi Jenny, 

      I have been considering asking my lecturers and after the summer I definitely will, because there definitely does need to be more research. And i should be working closer with them next year as I'm part of a peer support programe for mental health so would definitely have the chance to ask and see their thoughts on the subject, especially when the more people and Dr's that begin to know about the cluster of symptoms then the more we'll understand. 

      Thank you! And I will keep you all updated on any information i do happen upon.

      The best to you as well,


    • jenny92300 jenny92300 moon41001

      Welcome Moon!

      I am very interested in what investigating and questions you are wanting to do! I am hopeful we can obtain some answers. Right now I believe the Drs are treating symptoms verses the core illness... Yet maybe that's all they can do. But if we have answers then it will be a condition verses us just being depressed anxious sick individuals - and finally be taken seriously.

      All my best to you


    • paige74028 paige74028 jenny92300

      Hi everyone,

      Sorry I haven't been around lately. I had intended on adding my issues that are possibly related to RH. My recap is that I was born just months before  rhogam had it's final approval.  I was induced 2 weeks early and had exchange transfusions for at least the first 24 hours. I did stay in the hospital for a few extra days for monitoring

      Extremely shy as a child. Which was most likely anxiety but it was the 70's so there wasn't much attention put on things like that then

      Anxiety my whole teenage and adult life

      Severe ocd

      Dental issues 

      I had problems with the small muscles in in hands as a child so things like tying my shoes or coloring in the lines was very hard for me.

      I had intoeing?  My feet turned in, and I had to wear a brace to bed as a baby to correct it. One foot still turns in slightly.

      I've had gi problems for most of my life. Gerd and intermittent distention/bloating that doesn't correlate with diet. 

      I have always did well in school academically, and I have an undergraduate and graduate degree.  I can only guess that only certain parts of the brain were affected or it was a combination of that and the shear stress of the environment in utero.  My issues seem to be more mental health related.

      One thing I wanted to add is that it seems like it wasn't treated very seriously after I left the hospital with 10 fingers and 10 toes. My mother said there were a few follow ups, but other than that it was just sort of not thought about again.  Seems sort of odd, but maybe it's because I lived it was considered a success at the time.  Did anyone else, well your parents, get a similar type message? It could just be my mother's recollection also. Not sure. 

    • christine64233 christine64233 paige74028

      Thanks for sharing your symptoms, Paige. It is quite remarkable how similar the symptoms for all of us (speaking on behalf of my daughter) are. Unfortunately, my daughter was not academically very able although some symptoms may have stopped her achieving more.... which is sad given that her elder brother went to Oxford Uni and she comes from a fairly academic family so I can only assume that parts of her brain were affected?

      However, the muscles in the hand resonates, we thought it was perhaps a kind of dyspraxia/visuo-spatial skill thing. Extreme shyness, anxiety, panic  during school life, OCD, gut problems etc. all the same.

      Although my antibody levels were monitored during the pregnancy, the post natal care was poor and as an infant there was no specific follow up for my you say, like you, she had 10 fingers and toes! 

      This is very helpful finding things in common...How do you cope with these issues? The more we can understand what the common problems are the better we should be able to share coping strategies. But as I see it the main thing is to get recognition of the 'condition' and that there is a reason for there being these cluster of symptoms. 

      Keep sharing and hoping 🙂

    • jenny92300 jenny92300 paige74028

      Hi Paige,

      Your life experiences sound very similar to mine - but I was fortunate to not have the muscle weakness - till I hit my 40's. Then my body has just fallen apart. My mom always attributed my depression on my traumatic taken a month early / birth and month in the hospital. I agree drs think because u lived then everything is fine. I disagree.

      My bad teeth,, osteoporosis, osteo arthritis thru out my body... The GI problems/ulcers/GERD/ diverticulosis and diverticulitis, c-diff ... U know the list goes on... But the bowel problems are the worst bc 1. It keeps me isolated if I can't leave the house and 2. different drs for years said I had IBS (I'm a female with depression anxiety - it's an easy excuse for a diagnosis) but finally a dr said 'you don't have IBS if you wake up at 3am and keep going to the bathroom for 3 hours'. Despite anti diarrhea meds... Anyway -

      I believe, from my college and work studies, the brain and gut are connected thru serotonin and one relates directly to the other. Hence GI and depression/anxiety.

      I wish we could all get together or develop something for us.

      And btw my new friends - my husband has decided he wants a divorce bc of my health. 26 years of marriage - been together since we were 19 - it's so sad. I taught him to ski, taught my girls to ski as preschoolers, i kickboxed and roller bladed... Taught my daughter gymnastics that I used to do and she became a national winning tumbler...

      But I guess I'm just having a pitty party... (Spell check made it potty party before I fixed it... how funny is that?!) but my husband just told me a few days ago... So yeah - I feel sad and defeated. The crazy thing is - I've been doing better and he's gotten angrier. Thanks for listening/reading. All my friends here are also my husband's friends... So I feel alone. I won't say bad things or be sad since they care for him too...

      Feeling lost and alone. Any tips?!

      Thank you guys and I wish all the best health to you all.


    • paige74028 paige74028 jenny92300

      Hi Jenny,

      You are not having a pity party at all.  You are going through so much right now, and I am so so sorry that on top on the health problems your husband isn't supporting you. You aren't alone. We may not know each other, but I'm here for you. I'm divorced and I've been through some stuff too.  I know exactly what it feels like to feel lost and alone and to have health problems too. If you need to talk about all of this don't hesitate. We've all had struggles and we can all help each other.  Take care. 

      PS If there is a message function, I haven't looked, feel free to send me a message any time if you need someone to listen.

    • christine64233 christine64233 jenny92300

      Hi Jenny

      I am very sorry to hear about recent developments re your family situation. Very tough! However, you are not totally alone. My daughter, due to her RH difficulties has never got as far as real independent living and certainly no partner and no likelihood in the foreseeable future as the symptoms as you know, deteriorate. She would desperately like children but it is unlikely now. That is not to say her situation is worse than yours.

      Right now you are going through such a lot and I will pray for you and also that there will be a break through in the acceptance and treatment of this awful 'condition'.

      Keep sharing 🙂

    • rex92285 rex92285 jenny92300

      Hi Jenny,

      So sorry to hear that your physical problems,though no fault of your own, has affected your personal relationship with your husband. With everything else "we" have to deal with on a daily basis, it just doesn't seem fair that this is a byproduct you're having to deal with. Wishing you all the best!


    • nancy57581 nancy57581 jenny92300

      The more I read the more I am amazed! I could be reading my own story. So many similarities to all the stories. Never new my Rh- statis would cause so many issues. Called "sickly" my whole life, I have also been diagnosed with bi-polar disorder, asthma, gerd, acid reflux, hydradgenitis, 3rd stage kidney disease, hypothyroidism, anxiety, massive weight loss, fatigue, pain, nausea, vomiting, airborne-medication and food allergies, weakness, the list goes on. After decades of dr. visits, tests and gallons of blood drawn, I have an answer. CVID! Common Variable Immune Defiency. I'm not crazy nor am I a hypochondriac. The more I learn about CVID, the more I see a possible connection to the Rh- factor. Has anyone else noticed a correlation?

    • marwebber2 marwebber2 paige74028

      Hi Paige,

      I know you wrote this a couple of months ago, but if you have the names/any info on those studies, I work at a university and my husband works at another one. Between the two of us we may have access to those databases (university libraries tend to subscribe to oodles of them, although neither of the schools we work at have medical schoosl so maybe not in this case).

      I'll try to search myself from now - if I find anything I can share summaries on this board.


    • paige74028 paige74028 marwebber2

      Hi Martha, 

      I didn't keep the bookmarks for the studies I found before. I just did a quick search though, and I found one of them. Also, I can't give links on this site without a delay in the reviewing process. The title of one of the studies is  "A Follow-up Study of Survivors of Rh-Haemolytic Disease".  It is found in [u]Developmental Medicine & Child Neurology[/u] Volume 16,  Issue 5, pages 592–611, October 1974

      I found the studies at the Wiley Online Library.  I believe I looked at the citations and references for that article, and I just searched that database to find the other studies.  

      I am really looking forward to hearing what you find.  Thank you smile

    • christine64233 christine64233 marwebber2

      Hi Martha

      I have been following this thread/site for a year or more now on behalf of my 34 year old daughter who was my second child (I am RH negative and my husband RH positive and the anti D shot was not properly administered and my daughter's jaundice, soon after birth, was untreated..therefore I consider that she suffered/suffers from the effects of RH disease). My first child was fine. My daughter has many similar health issues to those who contribute to this thread and the symptoms are increasing with age.

      I would be so grateful if you could find out more as my daughter can't research for herself and I feel that I have to help her for as long as I am able so that her difficulties will be taken seriously when I can't support her any more.

      Bless you for offering to help and I hope that all on this site who suffer will eventually be able to have their condition accepted by the medical profession and hopefully, in time, some kind of treatment will be found.

      Thank you 🙂

    • marwebber2 marwebber2 paige74028

      Hi Paige and Christine,

      Let me see what I can pull up - this first link is beyond helpful. My area is the humanities so I am not as familiar with the academic journal titles in medical fields. 

      Also I just checked on my university's library page and I do have access to the Wiley Online Library. If for any reason I can't put stuff up here I think we can private message each other through this and we can exchange email addresses. That may be best for any pdf attachments of articles I'm able to download. Let me spend some time searching today and I'll update. 

      All my best to you, 


    • marwebber2 marwebber2 christine64233

      Update for both of you: I've already downloaded the article you had found Paige! Will keep trying different search terms in this database - specifically I will try to see if I can find anything that cross-references with "CVID" since that has come up a lot on this board.

      I just scanned the article (in pdf form so feel free to private message me through this thing with your email address and I'm more than happy to send it directly to anyone) and here it is in a nutshell:

      - They looked at a total of 1544 infants with hemolytic disease due to Rh-incompatability born in Newcastle upon Tyne between 1952-61 when exchange transfusions was the treatment used but were only able to follow up with about 285 children (they looked at them ages 7-14 so still developing/really seems focused on questions of development). 

      However they only focused on looking to measure very particular health rather than being interested in a comprehensive view. So in this study they focused on levels of hearing, speech/language ability, and brain damage.

    • marwebber2 marwebber2


      Just scanned a 1970 article from Developmental Medicine & Child Neurology (Volume 12, pages 16-26) called "A Developmental Study of Cognitive and Personality Characteristics Associated with Haemolytic Disease of the Newborn" (Stewart, Walker, Savage) 

      - They conducted a follow-up of 150 children who had been born in a certain region of England when exchange transfusions were in use. 

      - Results: birth weight of an infant with the disease impacted the severity of the baby's experience with the disease. There's also something I'm not really sure how to interpret about sex: it seems to say both girls and boys experience the disease similarly (one no more severe than the other), but that there as a "genuine sex difference in intelligence" with the girls having lower intelligence. I can't tell if this is just medical code for saying "girls are usually dumber than boys" or that girls with the disease seemed to have lower intelligence measures. 

      - Besides intelligence and motor abilities, they wanted to look at personality based on anecdotal evidence that babies with Rh disease were more nervous and other symptoms. There weren't any hugely statistically significant results in this but the study did find that "children with lower hemoglobins and more extensive treatment at birth show more symptoms of nervous tensions and are more dominant but less persistent and conscientious than less severely affected children." They summarize this same finding as in the conclusion section "there is a significant suggestion that severe haemolytic disease may be linked with emotional tenseness, of consientiousness and dominance" (their emphasis). 

      My layperson's interpretation of this study - it really seems to affirm a lot of folks in this discussion who have discussed being diagnosed with anxiety, depression, OCD and associated conditions. Early on they describe anecdotally about how babies and kids with Rh disease seem to feel emotions more intensely in everyday situations. 


    • Rebop1979 Rebop1979 moon41001

      I am 37 years old and almost died from this.

      I needed 3 complete blood transfusions before i was a week old and was under uv lights

      I was diagnosed with a slight heart murmur as a child which now is diagnosed as a leaky valve

      All three out my childhood I was labeled a " hypochondriac" by my DR's in regards to my near crippling stomach aches

      It was only in 2013 that I was hospitalized for gallbladder and found out a month later that it should have been removed as a child.

      It had literally grown INTO my Liver!

      I had a bunion worse than my surgeon had ever seen in an elderly person removed when I was 16 years old.

      I nearly died from a unknown infection the year before with a fever that spiked to 105.7.

      I was diagnosed as learning disabled in the 80s and have suffered all my life with mental problems.

      I'm severe anemia and on 150 mg iron pills twice a day.

      50,000mg Vit D once a week

      I have major depression, massive panic attack s in my sleep,

      Arthritis in both knees, and middle fingers, carputunal in both wrists, tendonitis in both shoulders.

      Nerve damage along my whole spine from a skull to buttknuckle sprain the same year as the favor.

      And anger issues that would make Darth Vader cry in a corner!

      I have always wondered if all of this was connected ...

    • susan36515 susan36515 marwebber2

      Hi - Marwebber2 it's Susan36515.  This is so interesting because I was just researching the effect of early stress on preemie babies and found that many go on to have psychological issues because of the stress/trauma after birth, during critical brain development.  The Rh neg baby experiences intense stress/trauma beginning in eutero and so many of us had one or more exchange transfusions at birth.  It makes sense that this early trauma would have life long effects.

      I'm so grateful for everyone here and all the information you share.  Thank you.

    • sherry22637 sherry22637 jenny92300

      Hi Jenny,

      I am interested in this post of yours too. I have often thought about the psychological affect of being "Rejected" by your Mother. In reality, the Mother's body is trying to attack the baby.. seeing the baby as an invader. So.. when you begin delving into that, it might explain relationship issues, stress, anxiety and more.

      I've never voiced this before but I have thought about it quite a lot.


    • katie54321 katie54321 nancy57581

      I am a Rh baby and had a couple of blood transfusions when i was born. I suffer from ashtma, servere ezcema and allergies to grass, pollen, fruits, animals, dust ...many things. I am adhd and my brother also has servere bi-polor and eczema.

      my allergies seem to be getting worse as i get older, I wondered about a connection to rh -factor and came across this site but cannot find any other information on this.  I am sure I have lupus an autoimune condition and the correlation to rh-factor seems to make a lot of sense.

    • adag adag jenny92300

      I have discolored teeth too.  They call them "fever spots." 

      Strabismus Divergent Exotropia

      Major Depression

      Social Anxiety

      PTSD-like symptoms

      Absolutely "hated," to be touched as a boy

      Sensitivity to Bright Lights

      Sensitivity to Sounds

      Painless Migraines

      I honestly just pushed "out," into the world with a lot of hard work. My father, as much as I hated his guts sometimes, really MADE me do things.  There was no alternative in my house.  Things are starting to get better in my 40s.

  • rex92285 rex92285 Guest

    Hi Paige,

    Welcome to the forum and sorry you're having the problems you are. You're correct though in thinking there isn't a whole lot being written or talked about in regards to the long term affects of RH disease. This is actually the very first forum I've found where people are talking about it. I suspect that there aren't a large number of us out there and those that are may either not have been affected severely or haven't yet put 2 and 2 together in this matter. Hopefully the more that we discuss it the more people will join the discussion.

    • paige74028 paige74028 rex92285

      Hi Rex,

      Thank you for the welcome. I'm also sorry about everything you are dealing with. I agree that more discussion is needed. It took me 47 years to start to think about it as a possible link to my problems. It makes perfect sense though that if we were dealing with such a harsh enviroment in utero it could create lasting physical and mental problems. I did just find a study that linked rh incompatiblity to schizophrenia. That's all I've found so far though. I realize there really isn't anything to be done about it ,but it would be nice to know more.  Anyway, I rarely post online, but the reason I did is that I do hope for information. I'm happy I found this place.

    • christine64233 christine64233 paige74028

      Hi Paige, I write on behalf of my

      34 year old daughter as you have probably seen, and like you I am trying to find as much out as I can to support her as long as I possibly can. Unusually, she was affected in spite of having the anti- D which you may have read earlier was not administered properly and in spite of the medics knowing I had produced antibodies and that she was being affected in utero and crucially just after birth, we/ she was overlooked and no transfusion offered. I was told not to have a third child when I was pregnant with her. Like you, she is anxious and has OCD based IBS. She is also overweight and struggles to socialise with her own age group. She is great with older people who are able to make allowances and have a sense of humour as she has. As a young child she was very shy. I can find very little research. Perhaps there are very few survivors but I doubt it......just that medics don't seem to see it as a condition but a series of unrelated issues?

      I do hope we can all share information and support each other. Take care

    • paige74028 paige74028 christine64233

      Hi Christine,

      I am sorry about all of the struggles your daughter is dealing with. She is fortunate to have such a supportive mom.  I don't know how far you have gone into researching why the anti-D didn't work. Like your daughter I was a very shy child too and we do both suffer from ocd and anxiety. I also have some mild ibs problems. I'm just starting to delve into this. We do all seem to be in a minority so hopefully we can as a group come up with some answers and raise some awareness, and of course support each other smile.

  • paige74028 paige74028 Guest

    This is a link to an interesting story about a dr. in Canada who has spent his whole career working on Rh disease.

    Also what I got from the article is that he is one of the founding members of CONSORTIUM FOR UNIVERSAL RH DISEASE ELIMINATION (CURHE)

    Just thought I would post for general interest.


  • jenny92300 jenny92300 Guest


    Please go to the discussion on RH we have started as I and many others are experiencing the same conditions as you. I'm sorry you are having such difficulties. I requested we all list our conditions and since I requested it, I began by listing mine. I knew about my traumatic birth but only when I began experiencing debilitating illnesses and hospitalizations(at about 40) did my father disclose that my pediatrician predicted this. I'm hoping that if we all work together and get others involved we can figure this out.


    • christine64233 christine64233 jenny92300

      In relation to daughter....34 years old, 2nd child of RH negative Mum and RH positive Dad...Mum did not receive effective 'anti D' and daughter's post birth jaundice went RH disease


      Extreme shyness as child

      Difficulty 'fitting in' at school

      Marked difficulty staying on task...ADD?

      Dyspraxic like symptoms ..... balance, poor muscle tone, poor coordination, fear of slipping, of open stairs etc.

      Poor arithmetical 'feel' for the value of numbers (super speller)

      Severe bloating and IBS symptoms..daily stomach pain

      Inability to organise self, belongings, spending etc.


      Anxiety, more recently OCD traits


      Lovely person

    • jenny92300 jenny92300 christine64233


      I'm happy your daughter is doing wonderful despite what she's up against. It's SO difficult and she's so fortunate to have a Mum like you! Thank you for adding to the discussion/description of symptoms.

      For the 'record' I forgot to add fybromyalgia and constant fatique (could be just part of the depression?) to my list BTW.

      My mother disliked my overwhelming shyness as a child and my inability to fit in. She criticized me... So we will add that to my childhood symptoms as well. I did have great math skills (thanks dad) but spelling was average.

      About the math - check into dysgraphia as my daughter (24y/O) has that. She can't even read a face clock or do rote math but was not an RH baby.

      Also - with my bloating and symptoms similar to IBS: I recently took a 'bacteria overgrowth' test and had very high levels of bacteria overgrowth in my gut. They prescribed flagyl and it really helped!!! It was about a 4-5 hour in office test and I was in a lot of pain so the nurse saw my 'symptoms in action' but it was worth it!

      Take care and smiles and good thoughts to you and your daughter!


    • jenny92300 jenny92300 christine64233


      I need to say that I believe your daughter is very blessed to have you as a mother. I also have to say I believe a Drs. obligation upon saying 'congratulations! You are going to be a mom!' Is to find out the blood type of both the parents.

      I know tests include those for Down syndrome and gestational diabetes and pre eclampsia and genetic diseases after birth but maybe because I'm O+ I wasn't asked my husband's blood type? What if he was O- ? As a survivor and a person who has tried to research this disease and it's after effects I don't even know if a (+) mother with a (-) father or (-) mother with a (+) father of any blood type can produce this problem.

      If I don't know the exact answer with 100% certainty (I believe it's any blood type with (+) (-) incompatibility) - how can a young woman first pregnancy with no thoughts or concerns about obscure blood police negative type know to tell their dr 'I need this shot when I give birth bc my baby's blood type is opposite mine.'

      We kinda expect our Drs. To know and take care of these things but it's up to us to educate the Drs. sometimes.

      Just my thoughts here, blowing in the breeze.

      Take care


  • VioletSpiral VioletSpiral Guest

    Hello everyone.

    I feel so bad for all of you and your family members that are going through this especially when no one seems to understand what it's like to live this way.

    I found this discussion whilst curious about similar problems of my own and wondering if there might be a connection with events around my birth.

    I am 30 years old. I was not an Rh baby but had a similar issue, ABO Haemolytic Disease .This is where the blood types are incompatible rather than the Rh, causing a similar immune system response from the mother where antibodies are made which pass into the baby and blood cells are destroyed. Physiologically the potentially dangerous effects on the baby are the same such as anemia and severe jaundice so I think this is relevant to the discussion. The main differences with ABO as I understand them are that it is more common and unpredictable than Rh (can occur in first or any child in no particular order) and it is generally less dangerous except in severe cases or when unanticipated due to checks not being properly carried out by hospital (as was the case with me).

    My mother is O+ and I am A- like my father. During pregnancy my mother was given the routine ultrasounds but no blood tests were offered and not even asked about parent's blood groups (ABO incompatibility is not treated during pregnancy anyway but they should have at least identified the blood groups to anticipate the risks and so they would have known to test me immediately after birth). I was born full term weighing 6.4, mother says I moved and kicked strongly right up until birth so she never suspected anything was wrong. On the first day everything seemed fine aside from me having hiccups all day which my mother put down to a traumatic birth (both mother and fetal distress and forceps delivery). But on the next day doctors noticed the jaundice. This was when they finally did tests and discovered the ABO. I don't know what my levels were by then but it was obviously severe enough that they had to do blood exchanges as quickly as they could get hold of the blood (I think it was about 2 or 3 exchanges, the first wasn't enough). My mother doesn't recall them discussing potential outcomes with her but my father mentioned to me some years ago that the doctors had said if I survived I could be severely disabled. They kept me in hospital for 1 month after which it seems there was no follow up despite their previous concerns. It seems to be the case that if a baby doesn't show obvious signs of damage they just assume they are 100% ok and will have no further problems, even though it is known that the damage is a spectrum with varying degrees of severity.

    Childhood observations:

    For as long as I can remember I have struggled with things others seem to find easy. I have difficulty with my eye movements (it is even physically painful to look up) so I have trouble seeing all around me. My hearing has good and bad days but I've always had a problem distinguishing between different noises so I cannot hear well in a crowd or if more than one person is talking. I have difficulty controlling my movements and am very clumsy and uncoordinated. My speech is sometimes a bit difficult as well so I have to focus hard on that too, also remembering the right words. As a child I was very overwhelmed by being in school, there was just too much noise and movement all around me at once and I felt constantly bewildered. I also had some cognitive difficulties understanding other children/adults and my responses felt slow, like I couldn't keep up with them despite being intelligent. I was very shy although it wasn't classic shyness, more like a sense of depersonalization. Like my perception of the world around me felt sort of 'fuzzy' so it didn't feel quite real even though I knew it was. Physically I was always weak and sickly. I remember my parents getting hassle from the school due to the number of sick days I'd had in a year just from common colds and such. I was terrible at sports (uncoordinated, weak) and even just climbing a flight of stairs would cause my legs to ache, this was despite the fact I did a lot more running and walking than my peers - I used to run laps around the playground because I rarely played with other children, and I'd also discovered that running or walking allowed me to think much faster. My mother once asked me when I was little why I'd pace the room all the time and I told her: 'Because I need to. It helps my brain to function.'

    I had problems with writing, both physically controlling the pen and spelling. I could often read ok if I forced my eyes to focus (with difficulty). In fact I was reading at an advanced level. But when it came to writing I would often forget the order of the letters even in words I knew well. I was often criticized for having messy handwriting despite trying my best, and it always hurt my hands and fingers. In terms of maths it was another odd mix, I could do sums, even very complex ones for my age inside my head and know the answer - but I was completely incapable of memorizing a simple formula. Even to this day I cannot remember how to 'carry the 1', I can look it up and learn again but I just forget after a while. The teachers did notice I was different from other children and told my parents they thought I was mentally handicapped (as in retardation), my parents disagreed so I was given an IQ test and they were surprised to discover I was actually very highly intelligent.

    Health problems (sorry if I miss anything):

    Digestive issues that have been labeled as severe IBS although they include symptoms not typical. From early childhood there was problems with tearing/bleeding when going to toilet. By age 9 onwards I had intense IBS styles cramps bloating and diarrhea. By my late teens GERD and severe upper-abdominal dull pains occurring mostly after ingesting certain things (mainly spices and even small amounts of alcohol became impossible where I'd previously had no problems). Episodes of nausea and vomiting where a problem for a few years but that was likely due to NSAID medication reaction that made problems much worse. Undigested food in bowel movements, still have diarrhea most of the time. Hemorrhoids since about early 20s. A few years ago developed rectocele hernia (something more typically seen in women after childbirth). I've recently cut out wheat and gluten and this has helped a little with the cramps and bloating.  

    Chronically and sometimes severely underweight till my mid 20s regardless of calorie intake (and I'm still pretty slim now but then I also have narrow bones: face, fingers, nails, wrists etc are child-sized as if they never grew fully).

    Frequently recurring lower back problems started in early teens, became chronic at 19 when MRI revealed abnormal lordosis of the spine. Over the years pain and stiffness spread to the top of my spine, then my neck, then gradually everywhere. I have lots of creaking and cracking when I move my joints, in particular my neck which now makes loads of cracking even with the slightest movement. My fingers and hands have started to curl in like claws, they also have numbness and tingling. I'm fairly sure at this point that I have some kind of osteo-type issue but doctors are unwilling to listen since a very unprofessional, lazy and extremely rude doctor labeled me as having 'Functional Disorder' (basically a fancy way of saying we don't know and we can't be bothered to find out) without even properly examining me.

    Worsening tinnitus (ringing in ears). Pressure in ears that sometimes renders me partially deaf.

    Worsening eyesight. 

    Palpitations since 19.

    Chronic muscle aches since teens (although Magnesium Glycinate supplement has helped a bit).

    Kidney stones starting mid 20s. 

    Migraines since childhood.

    Worsening cognitive dysfunction (memory is much worse, attention span very difficult).

    Always tired/easily exhausted since mid teens, The addition of mobility issues means my activity is very limited by now.

    Systemic tendon problems since last year. In particular right achilles which has a lump where it hurts. 

    Very sensitive teeth with enamel problems despite rigorous oral hygiene. Bleeding and receding gums.

    Dermographism (an allergic skin reaction caused by even slight friction or irritation) has been worsening since mid 20s.

    Was told a few years ago I was 'a bit anaemic' despite having enough iron in my diet. I also used to get cracks in the corners of my mouth (a typical sign of anaemia), they went away with the addition of iron supplements.

    Tremors since mid 20s in varying degrees. Tourettes-like spasms such as head and arm jerks, sometimes a noise even comes from my throat now when it happens. 

    Terrible balance and is getting worse. I can't even stand still on the spot. I've been walking with a stick since 19.


    In terms of anxiety and depression I have noticed that I've started sporadically getting these feelings sometimes, usually lasting for a few hours then going away or transforming into irritation. It is very peculiar to experience this because it doesn't feel 'like me'. I was always fairly confident and have quite high self esteem despite everything. I do have some mild OCD type compulsions but I try to not give in to them when they occur, and I don't seem to feel too bad for it. Also I think a lot of this is down to not trusting my memory as well as I used to. Like I used to be able to remember when I'd zipped up my bag and not have to check, nowadays I have to keep checking it every so often because I can't be certain I did (and sure enough, sometimes I haven't. That never used to happen).

    I do feel as though I am aging before my time. I was never able to have friends my own age for very long, I just don't have the stamina to keep up with them on so many levels. My best friend is in her 50s and in most ways is much fitter than I am. My GP a few years back when I tried to explain how much I struggle with simple everyday tasks said: 'Don't let life pass you by'! I know what he meant but you know, it's not as if I was ever offered a choice! There was so much I wanted to do, and so much I still want now, but when I expend all my energy just to get the little things done and even then still seem to fall behind, I keep wondering if I'll ever even get the chance to fulfill my most modest of ambitions.  

    One more thing, just to mention I found this article about the affects of Bilirubin-induced neurologic dysfunction (BIND) on neurological development (hyperbilirubinemia is the severe jaundice that can be experienced by babies with haemolytic diseases like Rh and ABO). I found it interesting:

    Also reading about the long term symptoms of Kernicterus (the severe and more obvious brain damage that is known to occur from untreated/not successfully treated hyperbilirubinemia) makes me wonder if what many of us are experiencing might be a much milder or delayed version of this more easily identifiable condition. Children with kernicterus have:

    Movement disorders,

    Hearing problems,

    Eye movement problems,

    Speech impairment,

    Dental enamel issues,

    GERD and Impaired digestion,

    Conditions like osteoarthritis in young adulthood,

    Cognitive dysfunctions like problems with emotions, attention, logic, reasoning, problem solving, but usually not affecting IQ,

    Sound familiar?! 

    I really hope we can find some kind of answers to all this. Have a good day everyone. X


    • christine64233 christine64233 VioletSpiral

      Welcome to the forum, VioletSpiral. I am sorry you are having to cope with all of your difficulties. I hope that it gives you some comfort that there are others on this forum with similar issues, iN so far as we truly understand what you are going through. The kernicterus idea is interesting. We suggested this for our 34 year old daughter but were told her symptoms weren't serious enough at birth to warrant this diagnosis but as you suggest, it is quite possible that she/we suffer from a milder /delayed version.

      Thank you for the link, I shall look at it. Again you share many similarities of difficulties including coordination issues etc. etc.

      Keep in touch. 🙂

    • VioletSpiral VioletSpiral christine64233

      Thank you for your kind words Christine. It does help to know there are others out there with similar issues even if we are not properly medically acknowledged. I hope your daughter gets some answers. I think a big part of the problem is that many issues which may not show up easily in standards tests/observation may be little enough in themselves but are numerous enough that when combined they make for a more disabling internal experience to the sufferer.   

      At the moment, I'm trying to focus on adjustments to diet and such in the hope of improving my digestion and possibly other issues by extension, whilst it might only be a contributing factor to the rest it may be that poor digestion is a significant exacerbator. I can't imagine that those of us with persistent digestive issues, esp if they start early in life, would not have a big problem with vitamin and mineral absorption and eventually overall health. Or perhaps that's just wishful thinking on my part as nutrition is the one thing I might have SOME degree of control over.

      I'm often offline for several days at a time but I will try to keep in touch. smile

    • Taters0531 Taters0531 VioletSpiral

      Hi, I dont know if you still are active on this thread. I Have been reading your post and I need to ask. Have you ever heard of Ehlers-Danlos Syndrome or EDS? It is a genetic connective tissue disorder. It is systemic and can effect your whole body. There was recently a new classification including many new subtypes and diagnostic criteria. I have hEDS or hypermobile Ehlers-Danlos syndrome. It is the most common type and also the ONLY type that has a clinical diagnosis as opposed to a genetic test. There is current research finally being done to try try to pinpoint the exact DNA sequence. There are also alot of comorbidities that often go hand in hand. A few are Chiari, POTS, Dysautomia, CCI, Functional GI Disorder, MCAS. Please check this

      Link out it has the most current info and many great resources. There are many facebook groups also i belong to and I have learned alot if your active on facebook search Ehlers-Danlos or EDS. I am 44 and I am an RH positive baby. Taken by c-section because of fetal distress at 8 months. Multiple blood transfusions. I almost died several times. I am trying to figure out if there is any kind of connection between EDS and RH Disease. I have found one other mention of EDS on here.

  • susan36515 susan36515 Guest

    I'm reading this forum, I'm in shock and so grateful to have found it.  I was the fourth RH child born before the Rhogam shot.  The Dr. told my mother she should have an abortion.  I was induced early and weighed 4 lbs.  I had two complete transfusions in the first days of my life.  Like others here the Drs. were so surprised I lived there was really no follow up.

    I was always called shy which was really anxiety.  I had many severe ear infections as a child and was generally sick a lot.  I was born with flat feet, relentless insomnia and bad teeth. It's always been a struggle for me to fight exhaustion.  My family called me Lazy.  Now as an adult I'm formally diagnosed with depression, ptsd and anxiety.    I'm becomming OCD and ironically it seems impossible for me to keep myself, my home and my thoughts in order.  I'm extremely sensitive to light, sound, smell and touch and I've needed glasses from a young age.  I also have a very  touchy digestive system.  My joints are starting to hurt more and more.

    I find myself here because somehow I just knew that being attacked in utero from day one of my life must have some far reaching consequences and...I was right.  It's such a comfort to know that my feeling alone and unable to connect might not mean I'm "crazy"  (which I've been called many many times).  It means I didn't develop or feel the inherent safety of the womb as most people do.

    I'm sure my writing is disjointed and I hope you all understand.  Thank you for sharing your experiences because reading them today has given me a whole new perspective about myself and my struggles.

    • christine64233 christine64233 susan36515

      Hello Susan

      I am sorry to read your story. It is not at all disjointed in fact, it is very coherent. I joined the forum on behalf of my daughter who has many similar 'symptoms' of Rhesus Disease. Like you there was no follow up after birth and her symptoms as an adult are addressed individually and do not get any better as she gets older.

      You are not crazy and there have to be many others who were affected before the Rhogam shot (anti-D injection) became commonplace and indeed for those who for one reason or another did not receive the shot in time or for whom the shot was not administered properly......

      The more we can find out, the better,  and I really hope that in time, the medical profession will become more aware of, and accept the symptoms and be able to research in order to help those like yourself who have been affected. 

      There are times when I have felt that my daughter is being lazy although I know she is genuinely tired and that her difficulties are not her fault....I do so much for her, it can be hard.  But I know it is very hard for you all so the more we know and the more we share the better. 

      I hope it gives you a bit of comfort to know that there are others experiencing similar difficulties and I send my very best wishes to you.


    • susan36515 susan36515 christine64233

      Thank you Christine.  Yes it does give me comfort to have found this forum and identify with so many good people.  I truly admire your efforts to help your daughter - you set an example of what a good mother does for her child.  You're honest about your experience as her mother and persistent to help her.  Your kind words to me - mean a lot.  Thank you.

  • dianna33495 dianna33495 Guest

    I found out in 2010 that I had rh..took ten years to get a definite answer.went to mayo..diagnosed with polyclonal hypergammaglobulinemia.researched it and found out about this disease..mother passed in 1968 with cancer.and my father had her medical records sealed..he has passed and never found out frustrating..I feel better now that I know what is wrong with me ..I am 54 years old with hepatitis c ..not in blood anymore..also have cirrhosis..blurred vision ..joint issues.and so on..I am so glad to be able to speak to others that understand it

  • trudy81527 trudy81527 Guest

    I may be one of the earliest survivors of Rh disease, in that Dr. Wiener, who discovered the Rh factor, was one of my physicians early on, and my older sister remembers monkeys in his lab that was attached to his office when I was taken there for monitoring. In 1945, it was a total surprise that I was born jaundiced and blue, since the condition, as we know now, didn't appear in the first baby. I had blood transfusions through my head since the vessels there were large enough to accomodate the needles. Dr. Wiener wrote me up in the Medical Journal, which I suppose was JAMA. My parents are long gone now, and unfortunately, that's all I know. The questions I have now, at this stage of my life, don't seem answerable.

    Was I oxygen-deprived? If so, did that have an effect on me physically? Could I have inherited any traits from the strangers who gave my newborn body their blood? That last question is relative to those that most of you have as well. My headaches from childhood have worsened as I've aged. I tend to be a loner and a depressive to some small extent. And I'm kind of high strung. Yet for myself, I can't blame any of the Rh happenings for my problems. I could have died, should have died, so every year has really been a bonus. I'm really a miracle baby who is intelligent, caring, have children and grandchildren, but have had one husband I divorced and couldn't really form a healthy relationship with a good man. Is that from Rh? I hardly think so!

    My point is that I accept, whether I may want to or not, the physical and mental parts of me, as me--a combination of my parents and their families, and of my experiences and upbringing. That all. Think what you like and how you like, whatever gives you comfort, and that is what I'll do.

    This really isn't a reply to Guest, but being new here, I didn't know how to begin my own question/statement.



    • christine64233 christine64233 trudy81527

      Thank you for your entry, Trudy. As a second child of Rhesus neg Mum and Rhesus pos Dad born in the 1940's, you were very fortunate to have the correct medical treatment soon after birth and therefore as you say, each day is a blessing in that you have been able to live a 'normal' life.   I know many second children like you who have been able to do just that. Some of the people on this forum have either not received the correct treatment at birth or were the third pregnancy for their mothers and the symptoms and problems they endure mean are so severe that they cannot live a healthy, happy life. It seems that they want the medics to recognise their symptoms and condition as a result of the RH and to have some understanding and compassion for their situations and perhaps in time have some treatments to help them or at least which will help future affected individuals because oversights and medical neglect still happen/s.

      I guess the contributors to this discussion do, like you, accept their lot, but by sharing with others, it helps them to cope. 

    • nan94941 nan94941 trudy81527

      Hi trudy81527,

      Just read your post from months back. To some extent, I feel the same as you. I was born in 1960 and became seriously ill a few hours after birth and was given an exchange transfusion. Like you, I could have died, and the doctors were not optimistic. My transfusion was given through a vein in my ankle. I too feel like a survivor, and I know that, whatever impact the illness and subsequent transfusion had on me, I would not have survived a week without medical intervention, and am very grateful to the doctors who saved my life. I feel that I have lived my whole life on 'borrowed time'. With four children and seven grandchildren my life has been and is full. Howver, I do wonder about what my doctor calls the 'knock on effects' of my medical background.

  • marwebber2 marwebber2 Guest

    It means a lot to me to have found this thread and to hear from adults living with Rh disease - my mom was born in 1954 - also during that period when she was able to survive through transfusion, but without the Rhogam vaccination available. She suffered extensive brain damage - her ability to write is challenged (otherwise I would encourage her to write on here as well), but she has incredible artistic abilities in drawing, painting, and collage. She's amazing, but the only job she has ever been able to hold was as a house cleaner. Eventually we worked to get her disability insurance. 

    My grandmother was really embarassed and ashamed about my mom because of the time period, the social class to which she belonged, but also (I've suspected) the feeling that she caused what happened to my mom. 

    I'm a teacher of writing and have been trying to write about my mom as part of this "Rh generation" of adults who got to live before the vaccination (I think more people should know), but with interventions that may not have been enough to prevent complications or health challenges. I'd love to keep talking further with anyone who also processes this experience through writing or wants to tell their story to someone smile

  • tracytastic tracytastic Guest

    I am a (soon to be) 52 yr old woman. I was born in a US Army hospital on the top of a mountain in Eritrea in 1964. I was born jaundiced, suffering from RH Disease as well as ABO incompatibility and Thrombocytopenia. The doctors were stumped. They had no idea what was wrong and how to treat it. After a couple of week in ICU my parents were told to come say goodbye as I wouldn't make it much longer. They had to do 2 exchange transfusions.

    In childhood I had mumps, strep throat and scarlet fever and recurrent sore throats. As an adult I lost my tonsils to an extremely virulent bacterial infection, was diagnosed with pernicious anemia, develpoed intrinsic and extrinsic asthma, multiple environmental allergies, photosensitivity.and multiple episodes of bronchitis, walking pneumonia, pharingitis, ear infections and sinus infections. I don't get colds or flu-or if I do they immediately worsen into one of the above. Since 2007 I have had 32 seperate episodes of Bronchitis/pneumonia and have taken 70÷ courses of antibiotic. (It generally takes 3 courses to kill whatever bacteria is causing the iklness). I have even had a profound case of pseudomonas aeruginosa. Blood tests routinely show abnormally low neutrophils, though the wbc and lymphocytes are often high.

    I regularly breakout in "mystery hives". More often than not I can find no reason for them. Every day seems to bring yet another new allergy.

    I am, "always sick". I believe that the issues/illnesses I suffer from are directly related.

    About 10 years ago I found a study that follow a number of adults who had been born with RH disease and or ABO incompatibility-the results indicated that the adults developed autoimmune disorders. I have not been able to find it again.

    I am absolutely certain my problem is an autoimmune disorder and it is directly related to my birth. Even my doctors tell me its autoimmune but they cant name it. It isn't MS, CFS or lupus.

    Does anyone know of any studies?

  • nancy57581 nancy57581 Guest

    I am 45 years old with the Rh-factor. Last week I was diagnosed with CVID, Commom Variable Immune Deficiency. I too have dealt with similar problems. Looking into the connection between the two. If anyone out there knows or is in a similar diagnosis, I would greatly appriciate a response.

  • dianna33495 dianna33495 Guest

    I can only know from being tested at mayo..I had an abnormal brain mri..thought it was ms was negative.lupus negative,ra negative,limes negative and so on..looked through my mayo notes..found polyclonal hypergammaglobulinemia..I started to research mother passed of cancer at 26 ..I was 6.have no medical records of my mother..father had them sealed..I am from Indian descent..that I know..found something called the Indian blood group..also found cd44..researched them..I came to the conclusion that I was part of it..explained a lot of my illnesses..I was told my condition was inoperable..I am only 54..I don't want to know what's coming..I already have mild cognitive behavior..diagnosed in 2010 at mayo..worse now.cirrhosis of the liver..constant pain in joints and spine..extra bone and growth tissue..I could go on and on..biggest problem for me I have to avoid stress at all costs..I hope this helps you

    • jenny92300 jenny92300 dianna33495

      Oh Dianna,

      I'm so sorry to hear what you are going thru. It has brought tears to my eyes.

      I haven't read all the posts - I've been absent for about a month as my husband decided after 26 years of marriage he is divorcing me - (my illness(es) being the primary reason... But I'm doing better!!! Anyway...

      So others may have replied to your questions and I haven't yet read them. I took down your diagnosis and will research it. It sounds like an iron deficiency or iron over production (sorry - complete opposites but both wreak havoc and effect your liver). I will post again if I notice any of my symptoms seem like yours. Honestly - I think I posted before - I feel like an a 51 year young middle aged woman with old lady diseases.

      Anyway - too much about me. What are the Drs doing for you? Will your father release your mother's medical records now that you have a diagnosis? I hope he does. If sadly he isn't still alive is there a way u can obtain those records??? Wow. You have so much going on - PLEASE post if you need anything... Support via phone calls visits etc. this is a public forum so I know u can't disclose where u live etc... But I'd be happy to provide an email and weed out everyone so we can talk. If you need that.

      My heart and prayers are with you


    • dianna33495 dianna33495 jenny92300

      Thank you father has passed cannot get records..thank you for sharing with me ..I am done with doctors..personal choice..I am so sorry your husband left you..I was afraid of the same thing but he has been there for me..I told him I would leave because I felt like such a burden.but he did not want me too.i hope you find someone who will stay with you through your ilnesses.look me up on Facebook if you want


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