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
susanj1958 Guest
Posted
I am so happy and relieved i managed to find this group, I am totally stunned after reading so many post`s talking about the illnesses and problems that seem to have been caused by being what i was told i was a "Rhesus Baby". So far i have found 11 medical issues i have that are listed and talked about by so many of you here. I am going to carry on reading more, then will post again a bit later. Thank you all for being so honest about what are sometimes very sensitive problems. I wish you all the very best.
Sharon39454 Guest
Posted
This is new to me, I was born 62 years ago and the 2nd child of a rhesus mother. My brother 1st born was a fine 10lb baby, I came next 5lb, full term, jaundiced and dying. The Doctors knew nothing about this and for 5 days it was all down hill and as a last effort they tried a blood transfusion, it saved my life but at the age of 2 I had seizures, and my early childhood was earaches and tonsils. The biggest thing in my life has been a lack of energy, I would wake up as tired as when I went to sleep and this still happens now, I seem to have a problem with a lot of foods that make me feel odd or ill, there is also immunity problems. About 12 years ago I was diagnosed Autistic ( Asperger Syndrome). I have never thought the RH as being a factor in my life or health till now. My Mother remarried and had 2 more children and again first one huge and health and the second one was born at 8 months, but they were treating this by 67 and my mother went on for years giving blood for this.
?Question - could the Austism be due to this and how would being damaged by her blood affect someone throughout their lives
Sha
stephanie43226 Guest
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caroline987 Guest
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Hello I have a friend whose son was just diagnosed with RH disease after I did some research on the problems he was having and suggested that he be tested. The doctor Stated my friend had a better chance of winning the Super Lotto then her friend self-diagnosing RH disease, but the fact remains her son tested positive and that he is the only child she knows of being diagnosed at 10 years old and really wishes there were more studies on the disease to see how to treat it. Since this has been the cause of his several medical conditions up into this point, come to find out. he even had a mass on his brain which they thought was cancer and she's not even sure of that since she ate is considered a specialist and stated that cancer cannot be determined just by a cat-scan. Does anyone have any information on a 10 year old boy being diagnosed with RH disease this late in the game. It has been determined that he was autistic but highly functioning and he stopped growing at Age 2 he's only 38 pounds and has never had any kind of blood transfusions and now they're worried that he's so little that he would not be able to handle the transfusion. Are there any studies with children who are diagnosed later on.
kim84686 Guest
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Hi, I am in the USA and have had the same issue with finding info on this condition.....
my younger brother has suffered starting in his forties from type 2 diabetes and thyroid problems, colon cancer .....now he found out he is anemic and vitemin b deficiency this is all too much and no research going on.....I have the mental issues of depression add and panic attacks...... I'm child number 2....my older brother first born was an alcoholic....with issues too...
Guest kim84686
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Hi hope all is well with ur family,
My brother was a blue baby and he had struggled all threw school. I had bowel cancer and was told I'd been anaemic for 7 years yet know one did anything. I now have no sight in my left eye and again no one did anything until I was 9 years old. I can barely read and write and I'm 48. I was just left to get on with life.
Guest
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johnny.yuma Guest
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So I do not have RH but I was recently told by someone close to me that they do and it makes a lot of sense to them and explains why they are the way they are. I really know nothing about this disease except for what I have been reading online and in all of your posts. If this person in my life truly has RH I want to be there to help and be a source of encouragement. One thing i haven't seen much of and would love to know more about if you guys are willing to share with me is what helps? What gives you the strength to push through those really hard moments and the days that just feel like you can't go any further. What advise do you guys have and what can I do other then just listen. I don't expect this to go away but I do believe with the right plan in place the right support system and preventative care the lasting affects do t have to be so hard and so debilitating. Thoughts? Questions? Ideas? Advise?
Thank you
Debra4216 johnny.yuma
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I am a 62 year old female. I am the 3rd child in my family and was born "an Rh baby" at 8 months gestation. They thought that I was going to die. I had 3 blood transfusions at birth, the worst case in my pediatricians office. I suffer from severe resistant depression, anxiety, ongoing muscular skeletal problems and injuries, sleep problems, had breast cancer at age 52, and have been told by a neighbor growing up that my mother used to carry me around under her arm as I continued to scream and cry. So I assume that I was a difficult baby and my mother couldn't or didn't comfort me. I have been told that I have fibromyalgia and have had a lot of pain and have worked for 30 years to continue to try to function and try to lead a "normal" life. I often feel the need to just retreat. It seems like one thing after another to have to deal with with my body and my depression. Like the rest of you I never knew why I was like this. After reading all of your posts I now feel like I have an answer. It feels like it fits.
I have been fortunate that I have received good help. I have been on anti depressant medication for 27 years and although I have had to switch medications quite a bit I do find relief at times. I have also had very good body workers who help to keep my body functioning at some level that is better than doing nothing. I do everything possible with their help to remain active and I believe that staying physically active and moving in some way really helps physically as well as emotionally. My husband is very supportive although it has been a roller coaster of a relationship which does not help.
A Physiatrist is the type of physician that I first, by accident, found to help with my condition. I had zylocaine injections in my back, accupuncture, intense physical therapy, and help with pain medications.
It has taken constant work to continue to deal with this which is exhausting.
It helps reading these posts to know that I am not alone in all of this.
geraldine60291 Guest
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I was the 5th child born to my parents in 1943. The child before me was also rhesus and developed menengitous and died at 7 months. I received no blood changes as that had not started then. My mother went on to have a seventh child who died under the blood change. I survived but like many of the letters I have read have suffered many health problems; had breast cancer at age 47 but put my survival down to a brilliant surgeon. The worst health problem is severe anxiety and depression which can rear its ugly head at obvious times when suffering grief from losing a parent but can also come from nowhere. I have always wondered if being a rhesus baby had any bearing on this but have never been questioned about this by any doctor or psychiatrist (who I have requested to see)in order to 'try to sort me out' I can only describe this mental condition as having one less skin than other people as I seem to feel things so much more acutely. However I'm still here and trying to live life as best I can.
alison19267 geraldine60291
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patricia70745 Guest
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I was born in 1952 in U.K. An 8 lb baby.... second child. My parents were RH incompatible. My mother told me I am lucky to be alive.The Canadian Dr ( who was at the hospital for a while) was sure he could help me. I was totally transfused with O Pos blood at birth....and again at 6 mths for anaemia. I then began to thrive, being breast fed for 14 mths !
My childhood was a nightmare for my parents...I was naughty having awful tantrums and was excruciatingly shy with others. My early schooling was also a problem..I would not mix with the other kids and later on it got worse. I ran away home on my first day , on seeing all those other kids..At high school I settled in with a small group of friends, but my anxiety and ( I now recognise) depression became unbearable...in the sixties these mental health problems were not recognised.My home life was not at all conducive for my problems....the beatings made a more amenable child.
We immigrated to Australia in 1969 and my mental health deteriorated...slept around and got married to the wrong man at 19...my mental health was at an all time low. Had 2 boys and divorced at 28... Remarried a man with 2 boys at 30. Blended family was not great for my mental health...but stayed together for 35 yrs.
my mental and physical health declined tragically...we separated.
I spent Six months in a " clinic" where the psychiatrist diagnosed me as ..
1. Bipolar
2. Borderline Personality Disorder
3. Endogenous Major Depressive
4. Suicidal tendencies
I am now 65 yrs old, and have always been employed since I was 17 yrs old...I am a RN, a pathology Laboratory Technician and a Phlebotomist, I have a degree in English Lit, and a Diploma in Education. But all my life I've struggled with my mental health.
From 20 yrs on I suffered IBS,COLITIS, DIVERTICULITIS and recently bowel incompetence...had a Bowel Resection and prolapse reconstruction.
My thyroid was diagnosed as Hyperthyroidism and Graves' disease 20 yrs ago...therefore my mind does not turn off at night....and if not on meds Get thinner and thinner.
Neither of my sisters, or parents had these difficulties...Injust wonder if it has anything to do with my birth ?
rhonda62884 Guest
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There has to be more information for us out there somewhere!
I'm 1st born to incompatible RH parentd..born at 36 wks with Hemolytic Anemia.
Mother got jaundice within 1 hr of my birth.
I received no treatment except light.
I have social issues lots of belly problems and anietxy. .
Any information is valuable
graca23818 Guest
Posted
I cant help but feel there is a cconnection to his mother being RH negative. She had had a miscarriage a year before my huaband was conceived. My husbands blood is O+. I know complications can happen during pregnancy but i dont know if they can cause complications on adulthood. Thats a question i have asked for years.
His sister took on the RH negative trait and Lupus. His brother has a daughter with downsyndrome. We have gone back threw And my husband is partially paralyzed.
Answers would be great......
rhonda62884 Guest
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Wow...sorry about Hubby's issues.
I have done extensive research and can find nothing to explain what happens to us Rhesus babies when we are grown.
That tells me it's bad.
I myself have Mast Cell disorders.
Alot of these issues come blood transfusion at birth