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Adult suvivors of Rhesus Haemolytic Disease

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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

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  • jenny92300
    jenny92300 Guest

    Posted

    U probably won't ever see this but I hope u will. I spent a month in an incubator 50 yrs ago... I had 5-6 blood exchanges - my parents never made a big deal about it but my mom told me she feared my depression was from being so sick in-utero and after. My mom passed and then I got real sick a couple years later with broken bones-osteoporosis- anemia the doctors couldn't figure out why... Plus many other debilitating illnesses leavings unable to work. My dad - in the midst of losing his wife and seeing me go from an active mom working full time and physically active to being horribly disabled... Said "the pediatrician said this may happen in ur Middle Age". What?! I get my parents saying nothing to not give me like placebo effect... I already had depression anxiety and multiple bowel issues that we were told were abnormal /genetic...

    SO WHAT THE HELL!!!

    I believe a dr in the 60's said I'd have trouble given their own medical knowledge and history - but I'm on disability now! So ashamed! And I know what my dad finally revealed to me... Comments?

    I don't drink pop, I eat well - fresh vegetables, lots if proteins and vitamins - yes I ate fast food when desperate while working 40-50 hrs a week. But my friends bones aren't breaking and they aren't anemic and in pain daily and osteoporotic before menopause!!!!!

    • christine64233
      christine64233 jenny92300

      Posted

      So sorry to hear about your difficulties. It seems that no one in the medical profession accepts the symptoms of rhesus disease in those who  have been affected. My daughter suffers too and obviously the prognosis is not good for the future. I do hope that you are getting as good treatment as possible to help with anaemia and pain. Don't be ashamed about disability, it is not your fault that you have health problems and you have obviously been a 'worker'. Take care.
    • jenny92300
      jenny92300 christine64233

      Posted

      Thank you Christine,

      I hope your daughter is okay - how old is she? Please tell me more if u will? I am fortunate to have a good group of doctors... But they don't have any diagnosis... Only symptoms they each are treating. I believe that since now the medical community can usually treat RH disease before it becomes a problem... (Or they think once the child survives then there will be no long term problems) ... That there is no money in doing research and/or treatment. Sadly money and potential money seems to be the driving force behind any type of research. I do hope your daughter is okay and please let me know. Thank you, Jennifer

    • sherry22637
      sherry22637 jenny92300

      Posted

      Hi Jenny;

      I can relate to much of what you posted.

      I was born by cesarian section five weeks early becasue the RH disease would have ended my life in utero if I was not born early.

      I received three complete blood exchanges and spent five weeks in an incubator. I always knew that my immune system wasn't up and working as well as others. I seemed to catch every cold, flu or virus that went around and was always sick for much longer than other people with these things. Other than that, my eyesight was severely affected by the straight oxygen that was given in incubators 50 years or so ago. I have 20/40 vision in my right eye and 20/50 vision in my left eye. Still.. I was always grateful for my eyesight as many in the same situation either did not make it and if they did, they were quite often blind.

      As a person in my fifties, I have noticed many odd things that caused me to begin searching to see if my rocky early start, could have contributed to my increasing health issues. I've always been ultra active, a runner, walker, skiing and more. I am a healthy person that chooses to and loves eating healthy meals. This has always been a priority for me.

      I now have one pupil that will not dilate. It's tonic and causes me a lot of problems that add to my already difficult vision issues. I'm very light sensitive and driving when it rains is just a blur.. so I no longer drive in those conditions. Sunlight is blinding.. even with sunglasses.

      I've had so many surgeries that I've lost count. Everything from female problems that caused me to have a hysterectomy at 30, bone problems in my hand requiring surgery, a mass in my right arm pit causing the removal of the axilary lymphnode, acchilies tendon problems that are leading me to surgery soon and much more. It just seems tha when an injury happens, it doesn't heal.

      I have now had a really bad cold, cough and sore throat since December 30th. My immune system doesn't seem to pick up and do it's job.

      While having my tonsils removed as a child (I had one tonsilitis attack after another), I hemoraged and almost lost my life.

      I've also been on the verge of hemochromatosis ... where the body holds on to iron in the organs... but now when I'm tested, it doesn't seem to be a problem and I haven't had treatment.

      I have a severe gluten allergy and have had to go on prednesone many times when I have mistakenly injested gluten. My body can't handle it at all.

      Anyways.. It's odd to write about these problems and conditions.. I've just taken them in stride but now that I've found this forum, I'm more curious than ever if it is due to my rough start in utero and in life. It has always seemed weird that I can live a totally healthy, active life and eat very well and still have so many issues.

      Thank you for letting me vent. I was drawn to your post because we are in the same age group and I see that you are truly struggling as well.

    • katie63328
      katie63328 sherry22637

      Posted

      I know this is an old thread but I have been desperately searching for something to connect my dots and many things you described about yourself are me!

      I am 38 all I know is that my mother an I had RH compatibility issues, she says I was a miracle baby who had blood transfusions right after birth. My older brother was not so lucky and was stillborn. 

      No other medical record exist but I too was sick a lot growing up, severely underweight. But by my 20’s I was pretty normal and healthy. 

      In my 30’s however I had thyroid cancer, gallbladder removed, iron storage issues (too much iron), major pregnancy compilations (both kids are fine though) lots of other autoimmune issues. 

      Ugh. Glad to know I am not the only one!

    • twothirdsdutch
      twothirdsdutch katie63328

      Posted

      Hi Katie,

      I’m so sorry to hear about your challenges and what a journey you’ve had. 

      T.

    • rhonda62884
      rhonda62884 katie63328

      Posted

      Katie...your a lucky girl and must have asked God to Quide you cuz I just found this information last night!!

      US babies were born with compromised Immunoglobulin G (IgG) this results in HD which in adults is Cytotoxic Hypersensitive! !

      It appears to be treated by allergist.

      It is similar to Mast cell disorders.

      You've got a damaged Vagus nerve if galbladder is gone so you'll need supplements but there is a light at the end of the tunnel!!

    • katie63328
      katie63328 rhonda62884

      Posted

      Thanks! I will look into this. 

      I am off the charts when they tested me for food intolerances and true allergies (dairy, eggs, wheat) 

      Appreciate your response!!!

    • Kensdoll
      Kensdoll katie63328

      Posted

      What kind of a doctor tested you for food intolerance and true allergies?
    • katie63328
      katie63328 Kensdoll

      Posted

      My primary care dr is an MD and an OD and is very aware/knowledgeable about this area. I had blood testing done for the food allergies through him. I had patch testing done at my allergist for chemical/contact allergies and scratch testing to confirm my true allergies to food/environment...
    • katie63328
      katie63328

      Posted

      Actually patch testing was at my dermatologist - too many Drs to keep track :-)
    • dianna33495
      dianna33495 rhonda62884

      Posted

      Thankyou so much rhonda,you have made my day.this is exactly me.

      1962 baby

    • mirela89245
      mirela89245 sherry22637

      Posted

      Dear Sherry,

      It is good that you take good care of your body! Just imagine, if you didn´t, how bad could´ve have been!

      All of us are struggling with so many illnesses, but what I find absolutely fascinating, it is the fact, that everybody suffers and complaint from the same symptoms!!!

      I am very happy that I found this forum and to be part of it!

    • mirela89245
      mirela89245 jenny92300

      Posted

      Hello Everybody!

      I hope that my email will reach all of you!

      I am not sure how this site works, please advice!

      BECAUSE WHAT I HAVE DISCOVERED SHOULD BE SHARED WITH EVERYONE ON THIS PAGE !!!!!

      My discovery could save most of us!!!!!

      The lymphatic system is not working proper, therefore, is affecting everything else!

      I made the discovery by accident, ofter I went twice to a Chinese Dr.

      First he drained the lymphatic system, through a antic method of suckers(in Spanish are called ventosas)

      I have felt like sleeping and I barely have gotten to my home- I have slept for 18 hours, uninterrupted.

      Another time He performed just a massage. I have felt very ill! I think, because of dispersing the toxins into the body.

      I have tried at home the same treatment with the massage, made by electric massage machine- BUT when I was in the period time. All toxins came out, and I felt so much better. I try to make a point in the monthly massage. My health has improved.

      I am looking forward for your help with the propagation of the message.

      Thank you !

  • christine64233
    christine64233 Guest

    Posted

    Hi Jennifer, my daughter is now 33 and as such, I think she is very unfortunate to have been 'overlooked' in terms of not being properly treated in utero or post birth. Blood tests taken after my anti-D injection after my first child (not administered properly as I felt liquid at the site) revealed that the anti D had not done its job and as such, my daughter should have been closely monitored especially when she developed jaundice soon after birth. She was quite lethargic as an infant and has had poor muscle tone all her life, plus bad I B S etc.etc. It affects every part of her life. It is such a shame that the medical profession seem to have no understanding or help for RHDisease affected people even if there are very few affected. I assume it is all too late now and that like you, individual symptoms are medicated but that is it.

    Take care.

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