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
geraldine60291 Guest
Posted
I'm still desperate to find someone to acknowledge the fact that I was born before all the treatments for mothers and their rh children. I have had so many of the problems already discussed - depression, anxiety, fatigue. The fatigue was recently put down to an under active thyroid but despite taking medication for this the tiredness is still about the same . I had breast cancer at 47 years old, hysterectomy at 50, gall bladder removed three years ago. I am short sighted - the only one in the family with it although there could be some genetic connection there from ancestors. I think we are all very neglected by our NHS.
susan36515 geraldine60291
Posted
Hi Geraldine. You should be acknowledged because you are a miracle! I agree having survived before the treatments is so rare. I'm glad that you reached out here today. I feel comfortable saying between you and I that God has a special plan for you. I know others don't share that belief system and I honor them but specifically to you Geraldine, you are a miracle, God loves you. We here in this forum are uniquely qualified to acknowledge that survival without treatment makes you a very special person indeed. Frankly I don't think there is or will be much research on our conditions because there's no financial gain in it. I'm sending you all my best Dear Geraldine - I hope for you to find comfort and peace. If you're on Facebook look for me "Susan Elaine" South Dakota USA we can chat more.
geraldine60291 susan36515
Posted
Thank you so much for your encouraging words which I really needed today. I often wondered why God allowed me to live when two of my brothers died. I would love to stay in contact and will join Facebook to do this. God bless you
susan36515 geraldine60291
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Geraldine - you are so welcome! Let me know when you get your Facebook up and running. I'm looking forward to knowing you. God Bless You too!
2BonnieBlue Guest
Posted
Hello Fellow Adult Survivors of RH Disease -
I've been following along with your posts for the last few weeks and I'm happy to have found you.
I was born in 1960, my Mother's 2nd born child. She states I did NOT have blood transfusions. I was unaware of RH Disease / RH Incompatibility, until 2010 when I was diagnosed with a muscle disease at age 50. My Mother was here helping me recover from a muscle biopsy when she broke down crying and said, . . . "I have something to tell you that your Father and I never wanted you to know. You were born RH Incompatible, and I suspect that is what has caused this you're dealing with now."
I had never heard of anyone being born RH Incompatible.
I had just been diagnosed at age 50 with a muscle disease, the Doctor's said "There's no hope and no cure" You can imagine what discouraging words those were. Ironically, my Mother telling me for the first time of my being born with RH Disease, actually has helped me. The reason it has helped me is that since the medical doctors labeled my condition without hope, my own research into RH Disease has helped me to greatly improve my health. And the reason is . . .
Although all my online searching turned up initially little to no information on those of us born with RH Disease before the onset of the drug to combat it, I eventually found an article through the National Institute Of Health's website that stated that . . . One thing they knew about those babies that survived, was they all ... and here's the important part ... Were born with an enzyme deficiency, causing them to have a malabsorption problem. Contrary to what you might think . . . This was actually music to my ears. In my mind, I now thought, . . So, . . . If I can improve my bodies ability to absorb nutrients, . . . Then I may actually be able to improve my health. And that is exactly what I've done. i have regained 70% of my strength back. I'm not well yet, . . . But I'm vastly improved from where I was 8 years ago.
My quest now is to better understand what enzymes we are lacking and how to correct it.
Remember, . . . I'm no expert, . . . I'm just like you, . . . Searching for answers on how to have improved health!
Have any of you ever heard of the following:
Goucher's Disease (Pronounced Go-Shay) It has to do with your bodies build-up of Lipids and it not breaking down fats or storing fat properly. There are 3 types of Goucher's. Mainly dealing with G6PD Deficiency and Pyruvate Kinase Deficiency and defects in the RBC enzyme.
Anderson-Fabry Disease - A Lysosomal Storage Disorder. Intravenous replacement therapy of the deficient Alpha Agalsidase A enzyme is available. You can ask for a blood test to measure your levels of Alpha-Galactosidase A.
So, in summary, from what information I've been able to obtain, . . . We all need to focus on what enzymes our bodies may be missing and also, an emphasis on helping our bodies achieve maximum nutrient absorption.
I look forward to our journey of learning together and better health for us all.
Cheering you all on from afar.[/b]
douglas16177 2BonnieBlue
Posted
Bonnie, one thing i have learnt about us we are a tuff bunch. I don't listen to docs any more. On a number of occasions they have told me I am just getting old and learn to live with. I could write a book on doc and there negligence. I told my doc about RH and he rolled his eyes. One other thing I have found out about us we are together and not once have I heard any arguing or fighting amongst us. We seem to understand one another and have a genuine sincerity for each other. Thanks for sharing you findings. I have had health issues all my life, sick all the time. Flue, cold, flue, cold…just never stopped. I started tai chi 27 years ago and found a drastic improvement in my health. Tai Chi helps with digestion, absorption along with many other things. Thanks for the post.
vicki84913 2BonnieBlue
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vicki84913 2BonnieBlue
Posted
2BonnieBlue vicki84913
Posted
Hello Vicki,
I'm just like the rest of you, doing my research and finding what I can about RH Disease. I unfortunately didn't save the link where I found the information, but when researching RH Disease, the 2 disorders I wrote of, one being Goucher's (pronounced Go-Shay) is what I found in a medical researchers article.
Please let me clairify that I'm in no way saying we have Goucher's Disease. I merely am pointing to for some here that may find information on it helpful.
When you read Wikipedia's definition of Goucher's, they're not going beyond a basic description. I've found that simple answers about RH Disease are not readily available on the internet. However, the internet IS like an onion, you just have to keep peeling back the layers of information and see where it leads you. Maybe no where, . . . Maybe somewhere. Only you'll be able to determine. One thing is for certain, our main streams doctors will not likely be of much help.
Here is a link for the answer to why medical doctors today are lacking in helping us . .
https://www.ted.com/talks/leana_wen_what_your_doctor_won_t_disclose
Cheering you on from afar
2BonnieBlue vicki84913
Posted
Vicki,
I apologize, but when I first began my internet research 8 years ago, I was not saving or making notes of links to articles I found. However, if you'll go to the National Institute for Health's website and begin searching you'll find the research paper. It is not going to be in your first searches. You'll have to dig through but you will find it.
I've often wished I would have saved or made note of the link. Actually, I'm sure I did, but probably on a yellow sticky note in a file somewhere and have filed it away. It's an important paper because it told of the exact deficiency we're lacking. I believe it started with a b and again it's an important part of this puzzle. I too need to know which deficiency / enzyme it is. I'm trying to get my 2017 taxes filed, but when things slow down, I'll look for it. We all need to know.
Cheering you on from afar
2BonnieBlue douglas16177
Posted
Douglas, We're all in this together and maybe between all of us, someone may shed even the tiniest of information that will lead another of us to something that will improve our health.
Cheering you on from afar
katherine88455 2BonnieBlue
Posted
So interesting BonnieBlue! I am the 2nd born of 7 children. I did get transfused at birth. I've had memory issues my whole life, along with mysophonia and borderline personality disorder. My 3rd born sister was almost dead at birth, very sick. My 5th born brother is deaf and retarded. My 6th born sister is manic depressive and ocd. My little brother died at 53 as well as my 1st born brother. He died at 53 too. I find this RH thing to be so interesting because my Dad is practically a genius and my Mom had a chemistry degree from Berkeley but all us kids struggled in school and healthwise. So I googled Rh babies and they sent me here. It has been such a relief to know that it was not my "fault" that I had struggles. My 3rd born sis has RA big time. I have joint problems as well. My Mom's body tried to kill us all in the womb! Man.....
2BonnieBlue katherine88455
Posted
Katherine -
Your saying about your parents high intelligence and how you children of them struggled in school brings me to share this with you. I've only known about my being born RH Incompatible for the last 8 years but all the while before, I would wonder to myself this .... My parents are highly intelligent, yet my brother and I neither one have the intelligence they do. When I would say this prior to knowing about the RH situation, others, friends of mine etc. would comment,.. "Oh you're highly intelligent" and I would reply "No, not compared to my parents"
It never made since to me before how both my parents could be so intelligent and us, as their children not be as intelligent as them. Actually, usually, the children of highly intelligent parents will be even more intelligent if not at least, "as intelligent" Now, . . . It's all making sense!
But Katherine ... Don't forget, that it was us, from the womb, that were trying to kill our Mother's from the start. Our Mother's bodies were only reacting to what our little bodies in the womb were doing to them! Gads!
Thank you for commenting! Cheering you on from afar
douglas16177 2BonnieBlue
Posted
2BonnieBlue douglas16177
Posted
Hello Douglas, Hum . . .
. . . In reply to your question, . . "What is intelligence?" Intelligence is, . . . The ability to acquire and apply knowledge and skills. IQ, brainpower, judgement, reasoning, understanding, comprehension, creativity, problem solving. It's true that many are smarter than they give themselves credit for, but it's also true that many are not very smart and and don't know it or maybe they do. Either way, . . as much as I might like to believe that I possess a certain level of intelligence, regardless of what my opinion is of myself, . . . Intelligence is measurable. There was a certain period within our education system that educators believed that the way to build self-esteem in our youth, was for every child to receive a ribbon. But eventually the educational system learned that they had produced a lot of youth with an over-inflated image of themselves. But I digress, . . . My statement in my previous post about not being as intelligent as either my Father or my Mother was simply fact. I'm a big girl of 58, have lived a little and can cope with reality, even if its not in my favor.
But back to the question of intelligence, . . . One can be better in one subject than another, or have a stronger skill set in one area than another, . . . But intelligence is intelligence. It doesn't necessarily mean one is good at everything, it just means they have the ability to learn and acquire and apply knowledge on a certain level that is higher than another level. And let's not forget, . . . Everything is relevant.
I certainly recognize that I am intelligent, but not as intelligent as either my Mother or my Father. That's always been somewhat of a mystery to me. Now I know why.
Thank you for commenting. Cheering you on from afar