Adult suvivors of Rhesus Haemolytic Disease
Posted , 173 users are following.
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.
14 likes, 475 replies
dru1801 Guest
Posted
ty for this information
my sons both have tourette syndrome , a movement disorder and i have restless leg.
i am a tranfused 1953 daughter.
of note i have a congenital heart defect , sub aortic membrane. anxiety and depression since forever and struggled with food, then alcohol (sober 8 years).
Missy2Eris dru1801
Posted
congrats on your sobriety!
alexandra52560 Guest
Posted
I am the same, I suffer from BPD,OCD, generalized anxiety disorder, depression, I have Reynaud's, dyscalculia, always had trouble with my teeth even though I stick to a diet low in acid and sugars and always floss. They are so thin my dentists have asked me if i suck lemons. I am always anemic it doesn't matter that I take it daily with b12. I am low in zinc and magnesium too. I have IBS, endometreosis, ovarian cysts, and i had perfect vision until i was about 16 I got glasses when i was 17 and every two years it gets worse, especially my left eye. I also have bruxism. I was born in Canada in 1997 and my mother was adopted, she may have had a blood transfusion as a child but her birth parents never mentioned it when she did speak to them and she was abused and not to get inti details it may have been that. my younger brother's blood type was compatible and he only suffers from the mental health problems that run in our family anyway. The hospital my mom went to is known for being terrible and they did monitor her a bit and still gave her anti D even though she was already sensitized way before. I was born with jaundice and anemia but they never did further tests or kept me in to treat me which they should have.
always knew I was born with this and after reading these I am certain this is related. However there is never any info on adult survivors and since it has not been prevalent since the 50's it just isn't really looked into. It is great to see a forum with others like me as I never knew there was this many of us alive.
chimeras_keep Guest
Edited
I'm so glad to have happened upon this forum because I've believed for a long time now that it makes perfect sense for a person to suffer enduring effects after having survived RH disease as a newborn. I was born in 1978, blood type O+, second child to an RH- mother. I'm told she had been administered the shot, but that it "didn't take", causing my 2 siblings and me to all be born "blue babies", each successively at greater risk for catastrophe. My younger sister, the 3rd child, was given a complete blood exchange, though the doctors had decided that for me no exchange was necessary, and I was only placed in an incubator.
Since early elementary school, I've experienced a lot of strange illnesses of different types, whether they be musculoskeletal, neurological, psychological, etc. Childhood symptoms/problems included scoliosis, TMJ disorder, migraine, sudden muscular weakness ("jello legs"), fatigue, epileptic-type,saring spells, extreme anxiety w/ bouts of rage & self-harm, etc. Also skin manifestations -- livedo reticularis, widespread, my whole life; and since mid-20's, granuloma annulare, widespread and dispersed. Almost forgot, I've had depression ever since I can remember.
In late 20's to present, I began experiencing the following: severe neck pain, severe low back/sacral pain, SI joint pain, muscle tension/spasm, and thru MRI found out that I had 3 herniated discs in my cervical spine (cause unknown). Occipital neuralgia & pain at base of skull was so extreme when
I was upright that I was bedbound much of the time. The pain and weakness in this area also led to cervical dystonia - extremely difficult to support my own head. More symptoms followed - vertigo w/ nausea, severe weakness & fatigue, eye nystagmus, light & auditory sensitivity, shortness of breath sp. when standing, and a burning, electrical pain deep in my thoracic region.
Finally in January 2018, I underwent autonomic testing, which led to 2 diagnoses so far -- small fiber neuropathy and autonomic neuropathy/dysautonomia. Exact cause? Unknown. Lol. So right now, it's marked in my chart as "idiopathic", which simply means, "We don't know why you're sick. Try these pills. Maybe you won't die."
If any of my story resonates with you, I'd love to know! Or if you just want to give a shout out to someone who probably gets it, feel free! 😃
Best wishes to all! God Bless.
jacqui12217 chimeras_keep
Posted
wow omg chimarus hiya i am firstly so sorry to read your post im sending you a big hug hun!
your post sounded as if i had written it myself! this is what ive been going through all my life!
im a resus babie and had a transfusion i was in intensive care for 6 months from birth ive had so many things wrong with me that i never managed drs to listen too and now im fighting drs for my nine year old daughter who has dystautonmia HEDS and vasvagol syncope im realising iv passed this on to her as im realising ive had most of these symptoms all my life the more i learn about her health problems iv always thought it was because of my problems at birth with my bloods etc thats why my daughter so poorly but drs wont listen 😦 youve given me hope to keep fighting Thankyou
jacqui xxx
susan000888 chimeras_keep
Posted
Hi, also a survivor, and I also have small fiber neuropathy and dysautonomia.
lindsay58631 Guest
Edited
Hi i know this is an old thread but its all i could find online. I am a 28 year old mum (Rh neg) and have two children who i am looking to find out if there are any later life problems from Rh disease. I am not yet sure if any of us are actually affected but i very much suspect we are from events that have happened. The NHS are not very helpful at all. Apparently in this day and age Rh disease should be no more because of the Anti-D injection but i feel there was a massive failing on the nhs part when i was pregnant which could have led to this for me and my children. My first born i was offered anti-d which i received but after birth there was a muck up with bloods and i was told my child was a negative like myself. I suspected she wasn't but was reassured she was. I recently after having my second child who ended up in hospital for 4 months (3 blood transfusions, born early due to hydrops and congential chylothorax) was told none of it was related to the fact she is a positive and i am a negative as anti- d was administered. I requested my eldest daughters notes and it says she is a positive and no anti d was given. Making me think that it is possible we are all affected now and it is because of a mistake on their part. I recently went to Gp to ask for blood tests to be done to be fobbed off. Anyone have any suggestions?
sue72859 lindsay58631
Edited
HI Lindsay
I posted a reply but it did not seem to stick
In short..I am so sorry for both your troubles. I am so glad you have all made it through. Do everything you can to boost the immune system in ways suitable for the age of your children. Lots of mud, outdoors, fun happiness and how about a wind instrument to strengthen the lungs. The Dr's have given you their best understanding as in depth research is missing.. even of when the Anti D works and when it may very very rarely not. So they are giving you their best experienced understanding since we apparently get no mention in med school and students only get 7 hours of basic nutrition. The body adjusts, I was fully transfused and lots more just after birth. I am just passed 65 and have had a really terrific life. Be aware that there may be sensitivities, and keeping it simple on the liver in every way including medications, really alive wholesome food from raw ingredients.. organic where possible and keep their spirits and energy up .. if rashes, itching sensitivities etc start, adapt the diet, and get creative. There do not seem to be uniform symptoms (until more research is done) but if your children have come through a congenital challenge, support the liver and immune system...keep it moderate and simple, let their bodies do the healing where you can and follow your instincts. I am sure you will support them to live a very happy life.
vicki84913 sue72859
Posted
Great advice, Thankyou!
vicky2822 Guest
Edited
please all get your b12, ferritin and vit d levels checked. i really think this has affected our ability to store vitamins.
B12 deficincy causes so many symptoms, fatigue, muscle weakness, pins&needles, hand & feet pain, gastric issues, back problems the list is endless. I feel so much better since getting my iron levels and vit d levels up and having weekly b12 injections.
sue72859 Guest
Edited
Dear Vicky
Thanks .. great advice
Yes my D3 went right down despite living in Kenya and I have been well on extra b12.
I will check ferritin.. I understand this is one of the liver functions most likely to be compromised. Eating red meat gets me almost hospitalised,,, just reading the BBC's latest thinking on Veganism and wondering how to get the balance. I know taking calcium carbonate increases probability of heart attack
https://www.bbc.com/future/article/20200127-how-a-vegan-diet-could-affect-your-intelligence
Signing up with a specialist nutritionist on my next visit to london.
Will give you feedback
I will point her to this site.
Thanks
Sue
chimeras_keep sue72859
Edited
Hi there everyone, I'm so glad to have found you all! I was born via C-section two weeks early in 1978. I was the second child born to a sensitized mother. She had been given the shot, but it failed for whatever reason. Despite having HD, I was not administered any blood transfusions, only incubated.
I suffered since early childhood with depression and severe anxiety, as well as other odd symptoms that doctors could not figure out - e.g., behavioral outbursts, "phasing out" episodes, migraines, leg weakness, TMJ disorder, & scoliosis. In my early thirties, problems with my cervical spine worsened, causing severe pain and other neurological symptoms. Severe fatigue and leg weakness reappeared. I also had terrible vertigo accompanied by nausea as well as light and audio sensitivity, and also cervical dystonia.
In early 2018, I underwent autonomic testing, and was diagnosed with dysautonomia / autonomic neuropathy and small fiber neuropathy (idiopathic). Just recently I found out that my iron was low, even though my red blood cell count was normal. Also, for a few months I've been going through terrible chronic hives/urticaria, which appeared suddenly in October 2019 and seem to have no known cause. I can't help but think that all this craziness is somehow linked to the very first illness, the Rhesus Disease. But unfortunately, no doctors seem interested. Oh well, just keep trying!
Thanks for reading, and God bless all.
vicky2822 chimeras_keep
Edited
please get your b12 checked. you want it near the top of the range not just scraping in. lots of your early symtoms could be due to b12 deficiency. look it up.
vicki84913 chimeras_keep
Posted
Hello Chimeras_keep, I wanted to tell you that i also have Cervical Dystonia. I joined a chat group for others with Cervical Dystonia and posted a question asking if any others also had Rh disease at birth. Three others responded that they did. It was a very tiny fraction of that group. I had two bouts of cervical dystonia, each lasting about 7 to 8 years. The first onset was at age 29; the second onset was at age 60. I was able to overcome it both times to the point where it does not interfere with my life anymore. Both times, the onset seemed to be linked to repetitive movement with my head in a fixed position. So, I am being careful with that for the rest of my life; and I hope to keep it at bay. Time & exercise seemed to be what helped. I also had thin enamel on my primary teeth, and loss of hearing in one ear. i was the 4th of 5 children, born in 1950, Exchange Transfusion. I was told by my parents that I almost died at birth and was in the hospital for one month before I was allowed to go home. They used to tell me I was a "Blue Baby" at birth. I believe there is a link to my RH Disease at birth & these health issues. I try to maintain a healthy diet & get enough exercise. Wishing you well, Vicki
geraldine60291 Guest
Edited
Hello to all Rhesus babies
Just to say we take notice of each other addressed as such even if the doctors choose to ignore it. Take heart from this 76 year old born before transfusions and having infant brothers dying either side of me. Yes I have suffered from many of the illnesses reported especially depression and anxiety but I thank god for modern medicines, although, of course, I just wish some research could be done on this instead of doctors looking at you as if you're not quite all there when you, a 76 year old. dares to say you were a rhesus baby. My love to you all
judy97545 geraldine60291
Posted
Geraldine, please read my reply of march/20 regarding my survival in 1946. We still look for a logical explanation for multiple long term effects from Rh trauma, our only dependable source of relevant information seems to be experiences of fellow Rh survivors. By comparing our sibling experiences and those of others, we can sometimes identify possible common clues and receive much needed validation of our concerns. Thank you for posting, every experience by others helps to encourage further exploration. Judy
sue72859 judy97545
Posted
Dear Judy
So glad you found us. I am a 65 year old transfused survivor born in Newcastle in 1954. Last year they tested my blood IGE for 10 vegetarian foods and total Ige. While these tests are all at the same level of unsure interpretation as skin tests, I was highly intolerant to all foods tested with an overall IGE of 292.. 8 points short of 300 which is regarded as pathological. I know from Dr Google it can spike into the 1000's so I think no one understands its meaning well. The reaction of the two medical doctors who have looked at it, one a gastroenterologist has been oh my God.. why are you still alive, and what do you want to do. The reaction of Nutritionists has been 'highly permeable gut' ( which gastroenterologists roll their eyes at) and strict gut healing diets as available on you tube ( we are not allowed to share names on this forum).I do hope more of us will get blood IGE tests done and see if it is something in common.( week teeth, low muscle tone, weak eyes ( different tics etc) , allergies allergies and tendency to mental anxiety and depression seem to may be some of the common factors.) I am now working with a herbalist in Australia ( I am in Kenya) as I have too many things going at once. ( intestinal parasites, internal infections etc ). But I recently wrote to him that suppose those of us whose livers were working overtime to clean up the mess with less that 75% blood count and blood cells dying everywhere.. supposed the foetus did not have time to finish the job of perfecting the intestinal lining in utero along with some other things.. ? .. I mean I will try ' healing' however not be disappointed if I end up at 'living with' as like you, I celebrate making it to 65. Well done you for surviving .. I do qi gung and am now gluten free and find freshly made different combinations of fruit and vegetable juices really great. Welcome. to the group. Sue