Adult suvivors of Rhesus Haemolytic Disease

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

Jenny

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......

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 . 

 

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. 😀

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!

Jenny

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

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

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'

Depression

Anxiety

Anemia

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 😞

Tachycardia

Palpitations

Migraines

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

Take care everybody!

Jenny

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:

Anxiety

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. 

Moon

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.

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 🙂

 

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.

Jenny

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.

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  

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,

Moon

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

Jenny

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. 

I forgot to add insomia.  I have had severe insomnia my entire life. 

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 daughter....as 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 🙂

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.

Jenny

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.

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 🙂

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!

Rex

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?

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.

-martha

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

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 ??

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 patient.info 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, 

Martha 

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.

Update: 

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. 

 

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 ...

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.

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.

 

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.

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.

Hello Moon,

This is my first time here. First off, I am going to apologize for my brain fog and wording issues. So sorry for all your health issues but I can relate. Please research and have a brain MRI done to check for ARNOLD CHIARI MALFORMATION. Warning though, MOST DR'S AND SPECIALIST don't know anything about it. I don't know, of course if it's RH related but it explains a lot of what you are going through. I became disabled from it at age 28. I would like to post about this to the conversation for all to see as this could very well effect many of us but i am unsure how.

I was born 1972, two weeks early, third child, Mom and i both almost died. I had an exchange transfusion, jaundice, weighed 4.6 lbs. Anxiety, depression and impulse issues all my life. Kegal muscle never fully developed and my urethra is 1/3 the normal length so i peed the bed until age 14 When a Dr finally figured out the problem and taught me kegal exercise. By age 35 The exercises no longer helped. Bad teeth all my life, dentures since age 30. Stomach ulcers by age 14, now gerd and has caused pre cancerous Barrett esophagus. Strep throat every year growing up. All of that was manageable until my gall bladder was removed at age 27 (causing IBS). Then it all went downhill. Getting extremely bad headaches, passing out, issues with walking, needing a cane or walker and sometimes couldn't walk at all, thinking, memory, was going paralyzed and much more. Dr's decided i was just mental and treated me as so. I kept getting worse and went from Dr to Dr. Left side of my face went paralyzed so finally an MRI was done in case of stroke. Results...not mental..per say lol. My skull didn't grow large enough for my brain and squished it down into my brainstem and spine. It is called Arnold Chiari Malformation. Spinal fluid had no room to pass to my brain. Had brain surgery twice at age 30. Disabled since with lots of nerve damage. MOST Dr's or neurologist know nothing about it.

Hope you're doing as well as possible.

Dena1972

HI. On the intelligence thing, I am caretaking a female form and I went to Oxford and got my Phd from London Business school. My son once said' Mummy you are not intelligent because you have not used it, unlike baba who used his to have a steady job ' I muttered ' I have used it for other things . As all of you will know, staying alive on a functional path has been a major occupation.... let alone navigating the more than interesting psychological states..and although we will not get OBE's I think personally we all deserve them.. to anyone here, know you have done it, you are beating the odds and living and loving. .. and those of you who so sadly are just starting out on what should have been an unnecessary journey .. you will make it, have faith, have courage and know that those of us up the other end of the curve..for all that life has asked of us, we have richness, beauty , humour, Grace and love in our lives. and yes have had to dig deeper than most people, . I suspect it has made us compassionate and empathic as well.. and so in awe of living yet another day ...So many interesting leads to follow up here.. thank you all for sharing. I like you no longer feel so alone. No longer tired of dr's and dentists saying well you are just a freak.. Also the realisation that I am not normal. most other people do get to experience something else as life.. and some of us get this...

Hello Sue

Thanks for your cheerful and cheering post. Yes, life can be an awful struggle at times but, as you say, we have made it and as a result are more compassionate and empathetic - do you find too much so sometimes? Us survivors should all meet up sometime for a celebration rally! Anyone out there agree? At least it would highlight our situation which has been so brushed off by the medical profession.

Best wishes to all Geraldine

Hi Katie, I'm Judy B., was born 1946 before they knew much about the Rh thing, mother tried to miscarry me at 3 mts. gestation but MD had a "new" shot (DES?) he tried that halted the process. I didn't receive transfusions but like my older brother, had severe eczema and allergies with anaphylactic type reactions, anemia, depression and chronic fatigue. My older sister was first born and never demonstrated the problems we had. There was a miscarriage prior to me, so I consider myself somewhat of a miracle, very grateful to be alive, even with all the problems. It is noteworthy that most of the posts here mention Depression, allergies and eczema, it has taken me many years to make the connection between the Rh assault before birth with the many problems I've had to deal with. Unfortunately we have very little research or validation of our problems other than sharing experiences via sites like this one. It helps to have one sibling to compare with and I like to share with others who might not have that advantage.

Since the first pregnancy doesn't have the antibodies to attack the fetus, they are still "normal", but the next ones produce more severe reactions. By comparing those symptoms my brother and I have in common with my sister, I get a better idea what might be result of Rh factor.

Several years ago there was an article that mentioned the use of DES hormone injections to stop miscarriages, but later the female babies had increased incidences of cervical Cancer. Since there are few of us who had these, I guess there isn't much interest in pursuing research.

Sorry my post is so long, but I wanted to share some information that might help others who have questions but no place to find answers.

I'm sending out a big Cyber-hug to all and thank you for your posts. Judy in California.

Dear Judy

I was born in 1943 and my story very much mirrors yours and I have written my full account before in the forum so don't want to repeat myself. What I haven't ever shared is the fact that although I am blood group B both my sons were born with jaundice. It didn't register as strange at the time as I was told many babies are born with jaundice and it is usually because their 'livers have not fully developed'. Both my sons were born late, the second had to be induced. I have wondered since if something in my blood actually brought this jaundice out but know there will be no answer to this. When I questioned my doctor about my history not being in my medical notes he said that it was because I was born before the NHS but I don't think he bothered to enter these facts, belatedly, to my notes.

With all best wishes to you all

Geraldine