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
nancy57581 Guest
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dianna33495 Guest
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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 it..my 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 dianna33495
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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
Jennifer
dianna33495 jenny92300
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Kensdoll Guest
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I can not begin to tell everyone how excited I am to find this forum. I have felt completely alone in all of this and none of my doctors understand what is going on with my body.
?I am the second child, my oldest sister had no issues. Unfortunately for me I was born jaundiced, anemic, and was suppose to have a complete blood transufusion immediately after being born but the hospital overheated the blood. I suffered from seizures until I was 6. From what I can get from my mom it seems as though when my seizures stopped everyone thought everything was ok and treated me as a normal child. I was diagnosed anemic again in 8th grade, had gastritis in 9th grade. I had something that was either never diagnosed or the doctor's never explained to me my senior year of college. I was sick the majority of the semester and I spent a week in the hospital because my liver enzymes got really high and my white blood count got really low. I got 4 shots a week for seasonal allergies for over 10 years. I have been diagnosed with Chronic Fatique Syndrome, Malabsorption, Arthritis in my neck, low immunity, depression, anxiety, and so many other things I can't remember right now because I an overwhelmed that I have found others like me. I will be 37 in a couple of months and I too have been told that I have the teeth of a 70 year old and that what I am saying doesn't make sense because I am to young to feel that way and have been completely dismissed by doctors. Although I do have a good one right now that is trying her hardest to help me figure out what is going on. She suspects I have MTHFR which is another genetic disorder and might explain why I have such horrible malabsorption issues.
?Please everyone stay in touch and if you hear of anything please share and I will do the same.
dianna33495 Kensdoll
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For you and your information..we are very strong souls..good luck with your diagnoses
Kensdoll Guest
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During my search yesterday and finding you guys I also found another site and was able to submit a question and I received this response last night:
"As you might have already gathered, there isn't too much information about the after effects of RH disease on the baby once delivered. I am cc'ing our Executive Director on this too so she can perhaps find out if there are some resources available for adults who suffered from RH disease. We will be in touch."
?I will update everyone when I hear anything.
christine64233 Kensdoll
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🙂
sashaBNL Kensdoll
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sashaBNL Kensdoll
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christine64233 sashaBNL
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Thank you for all your help, Sasha.
Christine👍
jo03773 Kensdoll
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Lucifer3030 Guest
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Hello, im new here. My wife found this forum yesterday and sent me a link. I'm 35 and my mother was RH negative. She was on her third child before they tested her and found it out. Well i was the fifth and final child, and it was so bad by the time i came around that i was induced two months early. It had gotten to the point where we had different blood types, and her immune system was trying to fight me off like a disease. They took me early telling her i would most likely be stillborn. I dont know much about what treatments i went through other then i know i spend a lot of time in the hospital. As far as "side effects" or long term problems, i dont know, but from reading through here i see im not alone. I have always felt like ive had intellectual issues. I have extreme concentration issues, depression issues, severe ibs, and comprehension problems in general. I am always at a lose for words, its like my brain shuts off, literally goes blank I have never been able to put my finger on it, but i am the complete opposite of my siblings. They are all extremely intelligent and all my life was told by my family that i don't care or don't try because i was not. I'm not looking for excuses just possible answers. Glad to know im not alone.
christine64233 Lucifer3030
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Hi Lucifer,
No you are not alone and hopefully before long, doctors will recognise, accept and help those who find themselves in a similar situation.
I know you care and that you try, my 34 year old daughter is just the same but it is hard for the 'outside world' to understand and therefore to cope with.
Good luck 🙂
rex92285 Lucifer3030
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Welcome to (our) forum Lucifer. If you have read my previous posts you will have noticed that I and many others here have similar disabilities. Concentration,depression, anxiety, comprehension when reading and grasping fairly basic concepts have been and still are issues with me. While in school, I always felt that I was just as intelligent, if not more intelligent than many of my classmates but my my reading comprehension and retention of text book readings left me with worse grades than I thought I should be getting. And just as you have stated, I was just the opposite of my two older sisters who were both valedictorians of their respective senior classes and went on to have very successful college years and subsequent careers. My teachers were quick to say that although I was intelligent, I just didn't apply myself well enough.
alison19267 rex92285
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Hi Rex and Luckier,same here,I had a complete blood transfusion as I took after my dad and was A+, while still in the womb,they changed my blood to 0 positive and was taken 10 weeks early and weighed 2 Ilbs,zi have always felt tired,lacked concentration and found reading interesting but really couldn't absorb it to revise,was a slow learner at Reading,stubble over explaining myself,often get the words jumbled or stutter, often miss pronounce words and take a bit of time to absorb stuff but feel that I am intelligent, but find it hard to concentrate,organise as easily distracted.My life has been filled with unfinished whims,courses incomplete,or hobbies that tiresome or left as become too difficult to follow through.I feel s often very sensitive to people's emotions and life situations that I feel overwhelmed and lack direction,and tire easily.I suffer from Ptsd,depression,anxiety,low self esteem and over eat to make myself feel better.But now feel thatvthere may be a reason why I feel too much!!!!!