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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.

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  • 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.

    BANGING MY HEAD AGAINST A WALL AND SO WILL HAVE TO HAVE A PRIVATE CONSULT WITH MY SON JUST TO SEE IF MY SUSPICIONS ARE CORRECT.

    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 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 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

      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 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 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.

    • alexandra 70180 katherine88455

      Myself as well as my two sisters received transfusions at birth. My sisters both received blood from family members. I received mine from a donor. I inturn am the only one of the three with Multiple sclerosis. I was dx'd at age 34, I am now 47. Thankfully am still ambulatory. My eldest sister was 55 when she passed but suffered most of her life with bipolar. Glad I found this site. I strongly believe this may be the reason I am the only with this disease in my family.

    • mirela89245 katherine88455

      Hello Katherine!

      I feel your pain. If someone like me, without important parents, with high studies, and felt the pressure of studying, and studying; I just imagine you and your siblings, how much you must have suffered!

      My memory problems started as a teenager and have gotten worse with the time...Now I am 43, and feel so bad about the fact that I cannot remember much!...The focus also is a problem- I have the tendency to start something and to go to another part of the house, and start doing something else...and so on...

          

    • a02091 mirela89245

      Same age just found this thread and same, memory has gotten worse and worse. And just figured I had add all this time. Always have known. I was an RH baby as well. Dad was as well and didn’t have shots so they made sure mom did... what do we know now for adults w this? Any study’s being completed? 

      Wish there was a way to get my memory back! Super frustrating! Best of luck to you all! Blessings ~ A

  • 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

  • christine64233 Guest

    Hello

    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 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 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 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 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.

    • Samisha christine64233

      I'm a 40 yr old rh negative mother of 2. This is the first time I've become aware that this disease existed! I just recently learned the rare characteristics and similarities of people that are rh-negative, and have been spending hours researching different articles and web sites (I guess that's what they are.) I'm not very computer savy but I've dug so much to know that we are definitely different... however this is the first place I came across any information about it actually possibly responsible for physical health problems! This is my first time being in a forum?/ blog? like this, i don't know if you actively participate in this still but am hopeful. I have many of these health complications and my 21 yr old daughter does too. Its rare for our problems to get diagnosed and we suffer. Hope to hear from you soon.

    • geraldine60291 Samisha

      Dear Samisha

      Yes this site is still active and, I believe, a great comfort to many as a light has been shone on many of  their health problems.  It is just a pity that hardly any research has been done.  I was not aware that those who had had transfusions still had problems as I managed to survive as a rh baby without them but, apparently, I'm something of a rarity.I hope it is of some help to you too.

    • brenda03504 geraldine60291

      Hi Geraldine!  I also survived without transfusions, but was a fairly sickly child until puberty.  I was anemic, suffered from seizures (was given phenobarbital until I was 7), was very thin, had a very poor immune system, very thin tooth enamel and some minor auto immune symptoms.  Later on I had gestational diabetes.  Some issues with depression and hormonal imbalances in my middle age.

      I consider myself fairly lucky to be a survivor!  I am also very thankful for this forum!

    • geraldine60291 brenda03504

      Hello Brenda

      I have only just picked up your notice.  At Last! Another survivor who did not have blood transfusions.  I began to think I was the only one.  Life can be tough at times but I believe that makes you appreciate the good times even more.  I am going to the doctor for a medication review in August and am going to tell them that this should all be on my medical records.  I hope they do not dismiss it as unimportant.  It is VERY important to us survivors to get some insight into our problems.

      Best wishes

      Geraldine

    • geraldine60291 kim84686

      Hello Kim

      I am missing all the correspondence with adult survivors and hope I get a reply to this.  I have written to Dr James Le Fanu  asking for his thoughts about Rhesus Haemolytic disease.  He writes in the Daily Telegraph every Monday and I'm hoping I will get feedback from him.

      Best Wishes from Geraldine

    • vicki84913 kim84686

      Hi Kim, I have been following this site for awhile. I am the 4th of 5 kids. Had exchange transfusions in 1950. Hearing loss on one side since birth, problems with enamel on primary teeth, at age 29 I developed dystonia. I am curious what your research has turned up. I understand that RH is linked to dyskinetic cerebral palsy. The bilirubin crosses the blood-brain barrier & deposits in the basal ganglia portion of the brain, which is the movement center of the brain. They have done autopsies on the babies that died & this area of the brain was stained yellow. The cells that are stained yellow die. I read that RH is linked to dyskinetic cerebral palsy. My sister/#3 wore braces on her legs for 1 year when she was learning to walk—she was born in 1946 & did not have transfusions. But she learned to walk & has not had problems since. I believe that my dystonia, which I acquired at age 29 is linked to basal ganglia problems from birth. So, movement disorders seem linked to RH. Also hearing loss and primary teeth enamel problems. Anyway, I’m really OK. I was told by the neurologist that I would have dystonia for the rest of my life. But, I have had 2 bouts of it (1980-1987 & 2011-2018). For me, I need to be careful of doing repetitive movement with my head in a fixed position, which brought on both bouts of dystonia.  I am getting over it for the 2nd time. I will avoid that now for the rest of my life.  I’m glad this forum is here. Thankyou for sharing.

    • deon 74952 vicki84913

      My husband has suffered with MANY debilitating symptoms for the last 20 years. I have often wondered and researched if it was linked to him beginning life as Rhesus Hemolytic survivor? He did have an exchange transfusion as a newborn. His was extremely dyslexic as a child (well, still is, I guess?!). At 17 he had his first bout with kidney stones...which started a new way of life for him. Since that time, he has passed more than 400 kidney stones. When we first married 15 years ago, I immediately noticed that he seemed to have slight muscle tremors, more pronounced when he was resting or asleep. He suffers from constant fatigue. Over the last 10 years, those tremors have progressed to be so horrible that he cannot sleep. He has been incorrectly diagnosed over the years with low-Parkinsons, non-verbal turrets, and most recently with a bad case of restless leg. My irritation with this is that it's not just his legs, and it's not just at night. Years and years ago I noticed him continually moving/twitching his shoulder and jerking his head in minute ways repeatedly. At night, though, they are all SO BAD. His legs jerk and twitch so bad that it's like he's having a seizure. A few years ago, he was going to try to get more exercise and as a teen he like to jog, so he started one day by lightly jogging a half a mile. The next day he was sore but decided to push through and tried to jog a half mile again. He ended up limping home. Long story, but after days of knee pain, he went to the doctor, who sent him to a bone specialist and they discovered he had fractured BOTH his knees! They also found out that he has incredibly weak bones and diagnosed him with osteopenia. They couldn't put him on a calcium supplement to help because high calcium would only make his kidney stones worse.

      He's been on so many different neurological medications over the years, from dopamine inhibitors to dopamine increasers, to anti-seizure meds, and also has been on anti-depressant meds for the last 10 years. We've seen so many specialist, and urologists, and endocrinologists, who do blood work and then shake their head and say they don't know. A few years ago, he just said he was done. He was tired of spending money and time for someone to tell him they had no idea.  Once, he begged an endocrinologist to do surgery because he had so many symptoms of a parathyroid tumor. But his blood levels are never acutely raised, and they all stop there. Nothing definitively points in one directions.

      Today, while again researching adult complications from being born the RH factor and having an exchange transfusion, I stumbled across a connection between that Cushing's Disease. My husband has MANY of the symptoms. I am going to beg him to go back to an endocrinologist and ask them to run every single test for Cushing's before they rule it out.

      In looking up Cushing's, I was led to this site! When I read your post of Dystonia, I had never heard that term and looked it up. The Wikipedia description floored me. Generalized Dystonia best describes him. 

      My husband is a cop, and so he cannot stay on heavy pain meds or take many neurological meds. After a few years of sadly watching my husband's quality of life diminish and having one doctor tell him he was facing renal failure in the future from constant trauma to his kidneys (he has kidney stone removal surgery 6 times because the stones were too big or too numerous for him to pass), I finally today feel another smidge of hope!  I am hoping that we can take this info back to a Pituitary Specialist and have them recheck everything...and that this time they will find something! It seems like it would be connected that the RH factor can attack and seep into the fetuses brain, and the pituitary gland is in the brain and affects so many other body functions! The adrenal gland is part of it and the adrenal gland produces a hormone called cortisol. Incorrect cortisol in the body causing Cushing's Disease, which cause kidney stones and fatigue and a bunch of other things that are hard to diagnose as a connected problem! Pituitary gland problems also affect your intestines ability to absorb calcium, which means it filters it out of your body...through your kidneys!

      My husband's list of symptoms (that I can recall right now!) are as follows:

      He is 38. He is average height and build, maybe slightly overweight? 6' tall, 200 lbs.

      He suffers regularly from:

      Chronic kidney stones

      Fatigue

      Muscle tremors

      Memory problems

      Low testosterone

      Low libido

      Dyslexia

      Depression/Anxiety

      OCD

      High Blood Pressure

      High Cholesterol

      Osteopenia

      The number one problem we have had over the years is that doctors run blood tests and nothing specifically jumps out at them as being extremely high or low. So they dismiss it. Has anyone else experienced this? ...Oh, my word, I just now wondered if there was possibly also a connection between misrepresentation in his blood and his newborn blood condition?!

      Anyway I wanted to share our experience and our journey and where we are and see if anyone else has a similar story?

       

    • geraldine60291 deon 74952

      Hello deon

      I have just read your report on your husband's many problems as you struggle for a reason and proper diagnosis. I am so sorry that you have had no real help from the different specialists you have seen.  By comparison I have suffered little I suppose but it is only fairly recently that I too found this forum and it has helped.  I was always a very anxious child, continually having to be put on 'iron' medicine and having time off school.  After my second child I suffered from severe anxiety and depression which, luckily, does respond to medication.  I had breast cancer at 47 years but that is OK now, had a hysterectomy at 53, operation to remove my gall bladder (full of stones) just three years ago.  I still suffer from fatigue which can be very debilitating and which no-one can really understand - I just want to sleep and sleep.I too have high cholestrol but it certainly is not my diet that causes it  I have recently been put on thyroid tablets but they have not had any noticeable effect on the fatigue.  Really,. being born with rhesus haemolytic disease and its possible consequences has had little or no research.  I trust that you can persuade your husband to see the pituitary specialist and that they can help. I was born before they had started blood transfusions so I doubt very much if the fact that i was born with this disease is even mentioned in my medical records. All best wishes

      Geraldine 

    • nicole 60576 kim84686

      I was born in 1973 to a RH negative mother , I had a blood transfusion but my brother was born in 69 and wasn’t so lucky . He became deaf , blind , mentally disabled and couldn’t walk or talk .. when I was born they knew what was gonna happen and decided to do the transfusion . My bother passed away at 8 years old , 6 years older then they predicted . I was 5 and I remember how much he suffered even as a child . I have had many weird health issues most of my life starting from my early teens and I was always a sickly child . My gallbladder was toast by the time I was 16, I’ve had pancreatic issues , stomach issues . Liver issues , learning disabilities such as a dyslexia , ADD growing up . I’m now 45 and I started having severe joint issues around 38, now I severe chronic pain , developed heart issues around 40. I have severe hypertension, I never had issues with my BP, it was always too low , now I struggle to keep it down . I have tachycardia, high heart rate, I’ve had kidney issues . It goes in and on . Now neuro issues . Some frontal lobe hot spots . I don’t drink , or use drugs , I’m not obese . I have started doing some research into the RH disease and he long term effects . From what I’ve seen it’s astounding the similarities I have read about . Severe stomach issues too . I’ve gone down hill over the last 5 years with no definite diagnosis . I do have diagnosed heart and spine issues , osteoarthritis, inflammation pretty much everywhere . No one knows exactly why . I have to believe that being born to a RH negative mother and me being Positive and all the long term things I have read about would make sense . It’s interesting to see others in my situation . 

    • vicki84913 deon 74952

      Hi Deon, I have Dystonia & I understand that there are no tests that confirm it. It requires a Neurologist with special knowledge of movement disorders.  I was lucky to be diagnosed soon after I got dystonia in 1980. But, I understand that many people go for years—even decades—without diagnosis. I have been told that if you believe you have Dystonia, you should go to a Neurologist who specializes in movement disorders. That person will understand the link between RH Hemolytic disease of the fetus & newborn and Dystonia.

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