1. Community
  2. Pregnancy and newborn
  3. Pregnancy and Genetic Disorders

Adult suvivors of Rhesus Haemolytic Disease

Posted , 173 users are following.

Guest
Guest

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

475 Replies

Prev Next
  • douglas16177
    douglas16177 Guest

    Posted

    I also started a blog about RH disease in 2009, take a look if you would like.

    http://rhsurvivors.blogspot.ca[/b]/

    D

  • Sharon39454
    Sharon39454 Guest

    Posted

    Thank you for your replies, this is the link to the Auckland study  [b]https://www.auckland.ac.nz/en/about/news-events-and-notices/news/news-2016/10/fetal-anaemia-transfusions-study-offers-heart-clues[b].html and there is a link in the page for further study.

    You are right Douglas, this study was about intrauterine blood transfusion but it gives you the idea of the further damage to babies who had to wait to be born to have a transfusion. Most of it is about the development of the heart in the fetus and also the common thread of low HDL - something I have had for years. Don't know if any of you had half brothers or sisters, the first child was my brother and weighed in at 10lb, I was 2nd and nearly died and weighed 5lb, my mother then remarried and my Step Father must have had a different blood as my half sister was a big healthy baby and my half brother was like me but they delivered him early and he had all the help needed in 67. I do have a question about this - have we passed the damage down to our children as in damage to our DNA, my children seem to have the same nervous system attacks as myself??

    Sharon

    • 2BonnieBlue
      2BonnieBlue Sharon39454

      Posted

      Hello Sharon,

      I'm fairly new to learning all about the Rh Disease we were born with, but as time goes by, I'm learning more and more.  For instance ... My daughter came down with Bacterial Meningitis when she was 3 years old.  She survived, but she was left with a personality change which having it under the age of 3 is known to cause.  The really interesting thing is ... A couple of years ago, I went online and researched the long-term health effects from having childhood Bacterial Meningitis and found the most shocking news to me.  It said there is a higher incidence of Bacterial Meningitis in the offspring of Mothers born Rh Incompatible.  Isn't that interesting?!  I was shocked to say the least.  And saddened.  

      So, to answer your previous question, I would say based on my daughter's health and my research, yes, our offspring are affected from our being born Rh Incompatible.  

  • douglas16177
    douglas16177 Guest

    Posted

    Hi Sharon, I believe the damage, we sustained, is past down to future generations through our DNA. I think i read a paper on this happening to war survivors. Trauma can be past down to our children and to be honest i see it in my kids. I think in a hole if we realize trauma caused by war and violence is past down then we might not be so willing to go to war and think of ways to resolve our conflicts peacefully. violence breeds violence, peace breeds peace. 
  • 2BonnieBlue
    2BonnieBlue Guest

    Posted

    To Everyone in this Adult Survivors of Rh Disease Discussion, 

    A recent video I watched from a Medical Doctor speaking on the subject of Rh Disease before the invention of the "antidote", referenced that back prior to 1970, the majority of the Mental Institutions were full due to those born with Rh Disease.  His statement really hit me.  I'm curious out of those of us Adult Survivors of Rh Disease here in this discussion group, this Question ... On a scale of 1-10 (with 10 being the most effected) where would  you say you are in relation to mental stability? 

    How many here have a short temper? 

    • kim84686
      kim84686 2BonnieBlue

      Posted

      Hi. I have had anxiety for all of my life but when I was young did not know what it was. I was very hyper could not sit still then as teenager I developed panic attacks they came and went. Then I turned 34 and they came back with a vengeance then came depression. My life on meds for this effexor and wellbutrin. I'm now 56. Still on med. I also have very weak teeth all are filled or root canal and crowns. Had to have multiple teeth removed.

    • 2BonnieBlue
      2BonnieBlue kim84686

      Posted

      Hi Kim!

      Thank you for your feedback.  It's interesting learning about all of this now isn't it?  I feel like we're just scratching the surface.  I'm so glad we're all meeting and have one another to compare notes with.  confused

    • kim84686
      kim84686 2BonnieBlue

      Posted

      Yes its very interesting. I started this search due to my younger brother having all kinds of medical issues starting in his 40 he has had colon cancer thyroid issues diabetic issues and was just diagnosed with anemia his levels were so low I could not believe he could still be walking and talking. But he works everyday and feels ok. But I know he could feel better. I was anemic when I was young very pale my son has a vitamin b deficiency that's genetic. He also has ADHD and anxiety. I wish they had researched this better.

    • douglas16177
      douglas16177 kim84686

      Posted

      Hi kim, I have started a facebook group call 'Adult Survivors of Rh disease". Hopefuly we can get enough info on this disease and help one another.

      Doug

    • elizabeth05820
      elizabeth05820 kim84686

      Posted

      Hi Kim,

      ADHD chinese medicine or homeopath medicine has worked for my son with great results.My son was cesarean birth. Doctor studies no contact with vagina fluid at birth is the reason for ADHD.I'm not sure. As my daughter was too, they're very different.  Chinese medicine missing cromosone from DNA.Iridologist brain injury pre birth.Homeopath alleries to foods. Leaky gut is what American doctors are reseaching.I'm in my late 40's I have some of issue as other are writting about. A chinese medicine practisioner told me to look out for breast cancer in the future as Mum O- side of family have scoliosis which congenital malformation of the chest common called pigeon chest. My guess is any of use have chance of getting cancer immune systems are challenged.My great grandmother from Denmark had Penicious anemia.As we have all moved all over the world,what we eat is different from our ancestors are we challenging our immune systems.  

        

  • jellybean49
    jellybean49 Guest

    Posted

    I am so happy this thread has continued! I am 49 years old, born in 1968. Rhogam wasn't available yet and my mother would've needed to have the shot before she became pregnant with me in 1967. I was induced early due to fetal distress. My father and aunt drove me 100 miles to a hospital which could give me blood transfusions. I had an enlarged heart and a stuck valve. I was not expected to live. At five months I had heart surgery to fix the stuck valve. The doctors warned my family that I would likely be not intelligent and weak with possible heart problems all my life. I am intelligent but with their low expectations and lack of support I've not done well. I am severely hearing impaired most likely due to the blood transfusions the doctors say. But my hearing loss was not addressed until I was 17 years old. I too suffer from low immune system, fatigue, muscle aches all over and depression/anxiety. I've had low blood pressure all my life and was diagnosed in 2008 with dysautonomia. I now take salt to increase my blood pressure but I feel like that might be causing other problems with my kidneys and liver.

    I am heartened to hear all of your stories. I know I'm living on borrowed time so I live my life to the fullest.

    • geraldine60291
      geraldine60291 jellybean49

      Posted

      Dear Fellow survivors

      It cannot be a coincidence that so many of us suffer from low blood pressure, fatigue, anxiety and depression.  Thank goodness there is medication for this.  I am going to the doctors for a review in August and will definitely ask about this and hope they don't dismiss it as unimportant.  Best wishes and bless you all.

      Geraldine

  • alison19267
    alison19267 Guest

    Posted

    Bless you, it is so heartbreaking to hear that you are suffering so much sad...you are being very brave!
  • oralia2018
    oralia2018 Guest

    Posted

    Hello everyone

    My son is 28 years old. Autistic with mental retardation.

    Reading these comments make me realize the RH factor may be a cause for my son's conditions.

    How do I get tested and him?

    Thank you

    • geraldine60291
      geraldine60291 oralia2018

      Posted

      Hello oralia2018

      If you are Rhesus negative blood group and your son had to have transfusions I would hope your doctor would have all this on your medical records and your son's and would be able to shed some light on his problems.  I shall be very interested to hear the outcome.  I don't know if you saw my post about writing to the doctor who features in the

      Daily Telegraph every Monday about rhesus haemolytic disease but I am hoping for some feedback from him.

      Stay strong  

    • vicki84913
      vicki84913 geraldine60291

      Posted

      Hello Geraldine, can you tell me where  cansee the daily telegraph? Is it online? Do you have a link to it? Thankyou.
    • geraldine60291
      geraldine60291 vicki84913

      Posted

      Hello Vicki

      My husband gets the Daily Telegraph on Monday when he does the shopping and it is available at any newsagents and I'm sure you can get it on line.  I haven't had any feedback from the doctor yet but I'll let you know

      Best wishes Geraldine

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.