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
Sharon39454 Guest
Posted
To Moderator
Just wondering why you would delete my post of an article that shows another side of what we have to fight every day. If you go through the ego and conflict of the reply's you will see some strange happenings in regard to two -s having a +. This would be a game changer and mean we or our parents would carry or pass on a recessive gene, we know that our Mothers have health issues after the blood barrier is crossed so maybe if we have both genes could the recessive gene be the reason for our problems and not just the trauma of our gestation. The only way we will ever find the answers to our questions and health issues is through sharing information - however unpalatable it may be, allowing everyone to have the opportunity to share in that knowledge and contribute their own ideas to the group.
I hope you take this in the spirit it is intended as the article raised a lot of ideas that I have not seen before, nor have we had so many -s and their stories ( again however unpalatable)
Kind Regards
Sha
sue72859 Sharon39454
Posted
Dear Sharon
Do you want to share the name of the article in a way we can search. There are some way out theories on origins of the RH negative that would not be considered scientific and I have read some more detailed rational thinking on different aspects of it. I have come to understand it as a mutation that happened, however long ago, somewhere between the West Coast of Europe, the Pyrenees and North Africa.. most of whom some thousands of years ago were probably seafaring and intermarrying. My mum was AB negative I am AB positive and 3rd or 4th child hence the need for transfusion at birth. My mother in law was also B minus despite being of Indian origin. Our sons are minus. so yes if there is something in the genetics of the minus that is important.. I agree it is very important to explore it, especially if there is something in some part of my inheritance from my mother that is still disruptive, despite the fact that I ( and I presume most of the survivors on this forum) are positive.
I have come to assume that at least our livers, immune response and maybe bone marrow are compromised in some way in utero that has not been understood yet. I think the focus all the things the liver would normally have been doing in utero such as storing B vitamins, ferratin etc makes common sense, so keeping an eye on the B vitamins, ferratin, D vitamins as strongly suggested is very important. We may also find that some of the other less researched brain and neural nutrients are affected, such as creatine, carnosine, taurine, EPA and DHA omega-3, things, that, as I am personally strongly allergic to meat, I will need to keep an eye on. The idea that there could be some kind of on ongoing mismatch between parts of our less expressed genetic inheritance from our mothers, ( we certainly have only her mitochondrial DNA) that leads to a variety of malfunctions and sensitivities is a very interesting one. Thank you for raising that idea. I hope you get to repost your article. Thanks Sue
sue72859
Posted
I mean ferritin.. sorry
jacqui12217 Guest
Edited
Hello!!!!! wow im so glad i found this site!
iv never put 2 n 2 together with regards to my health problems and being a poorly baby i just thought i was unlucky! I was born in the early 70's, had a blood transfusion and out in an incubator for 6 months under lights and no one was aloud to visit me, not even my mum. so glad to meet you all!!!! Jacqui x
anne20227 Guest
Edited
Does anyone know of any therapies that are especially helpful for the trauma that happened to those of us with Rh who had total blood exchanges? Like the psychological and physical trauma of the hostile environment of the womb, the blood exchange, and the time isolated in an incubator. I'm searching for effective therapies for the psychological effects of all that. Got any ideas? Thank you.
sue72859 anne20227
Edited
Dear Anne
Great questions. I think one issue as far as physical and clinical psychology medical science is concerned is knowing what the lasting effects on all levels in each person are... there has been limited clinical research. It could be worth talking to a psychologist with an open exploratory approach who deals with trauma... while retaining a tiny spot of wariness should it turn didactic ... 'because this happened to you, therefore you are this'
For me going on my own deep inner journeying, remembering and finding unconditional love assisted a lot, especially in the struggles with my blood family as my childhood was also adverse. Classical talk psychotherapy did not take me deep enough as my physical body needed the space to share its memories, not just my mind. In fact one pyschotherapist I visited for one session, asked if I would book another session for free and come back and explain it to her, as I was making sense to her. There is available research on the potential developmental impact of fetal trauma, maternal stress but little specific to Rh.
Does body follow mind or mind follow body? what is the continuous interplay between to two? How can we best intervene and when in order to bring about the change we are seeking for ourselves? In my experience and if you look through quantum biology, electrical fields etc , qi gung, Tai Chi, acupuncture, faith healing, and shamanic work, I think there is a lot we can explore of how to assist ourselves.
The trouble is as body following mind is the least explored in a clinical setting there are a galaxy of grounded and less grounded approaches on offer with many anectodal and case study testimonials. One friend has been exploring her birthing with and immediate loss of her twin brother and preverbal abuse in an on going shamanic group.. I look forward to her sharing the outcomes.
As a very dear friend says. 'she is perfectly perfect ( wonderful family and childhood) and I am imperfectly perfect... different route to perfection 😃
I am sure you are perfect as you are
Sue
Moderator comment: I have removed specific books, names etc. If users wish to exchange these details please use the Private Message service.
anne20227 sue72859
Posted
Hello Sue,
Thanks for your thoughtful reply to my questions. It is certainly a lifelong process. Hopefully we can find some meaning or silver lining to this struggle. In my fantasy I could use this adversity to help others in some way. Someday.
Anne
judy97545 Guest
Edited
I am a surviving RH factor baby born in 1946, before they understood a lot about the cause of my mother's multiple miscarriages. My sister was firstborn without noticeable problems, my brother was second and a twin, but twin died in utero, he's always had severe eczema and depression/anxiety. He was above average intelligence, excelled in science and math, but some behavior issues, short fuse and easily agitated with sounds. The 3rd baby died at 3 mts gestation, then when I came along, mom tried to miscarry again at 3 mts., but family MD was able to give weekly injections that stopped the process. I did not receive transfusions and was not jaundiced, but had severe eczema (mom had to add Benadryl to my baby formula), chronic Anemia and Depression with life long extreme fatigue and GI problems. At 73 years old, I still reflect on the blessing of surviving, but also wonder if there are others with similar life-long effects from the RH factor. I am the only sibling with severe seasonal and animal allergies including anaphylactic reactions to Brazil nuts and fish. (was I perhaps exposed to these while in utero?) I am so glad to find this site and read all the experiences of others, we all seem to need to share our experiences and wonder how much of our life-long health problems are result of the RH factor. It's good to know we are not alone, and congratulations, WE SURVIVED!
rickiel04448 Guest
Edited
Hi all.
i have gone though a lot of mental health issues, and also into adulthood (26) more physical health. I was talking to my mother the other day, and wanted to find out more about my birth. I knew about her bleeding and not having an anti D. I was born premature, and also had a undescended testical. Mentally I feel I have always had ADHD (also dyslexia) undiagnosed and have found as an adult hard to get a diagnosis, especially due to the waiting list ect. I’ve always been depressed and anxious which can make me very suicidal at times, but I’ve never been a very open person. So I will just suffer in silence and never get help. I am also gay, but I have always been extremely feminine since the age 2/3. I Most definitely experience some level of gender Dysphoria. But I’m also a very level headed with things, and understand that you cannot change your sex. but can act out of social gender role. Even if met with homophobia and hostility from others. My memory has always been shocking too. And as I get older it seems my mood swings get worse.
In my physical health. I have been suffering with
Headaches, Fatigue, Joint pain, stiffness and swelling, Rashes, tingling in hands and feet (Raynaud's phenomenon), Bleeding from anus Perianal hematoma and anal fissures, Swollen lymph nodes. Skin scarring or discoloration and folicallitus, Kyloid scarring. Lately Blurred vision.
Lately everything has got a lot worse. And I was worried about the covid19. I was thinking maybe something to do with my birth, could have contributed to a autoimmune disease. Also I’m wondering if I could possibly have a hormone imbalance. Maybe even as far as XXY chromosomes ect.
I finally got my first blood test on Friday, even though I’ve been super anxious too. Normally when I’ve previously been to the doctors, they have told me I am too young to have anything wrong and I am fine. Without even checking blood ect. I was sent for a colonoscopy over a year ago it still hasn’t been done. I’m hoping it’s an autoimmune disease and not something more insidious like Hoskins lymphoma. Irl keep you all posted but it’s nice to know this is a community talking about these troubles.
sue72859 rickiel04448
Edited
Dear 'Rikiel'. Thanks you for sharing. I am so sorry for all your troubles. I just wanted to share that I am really struck by what comes across in your post which is that you are a soul in charge of themselves and assured of who they are. I have recently found that exploring different diets like gluten free and lots of fresh juices has assisted me to find an even keep even though I still have underlying issues. Be very careful with this viral pneumonia are stay isolated. I assume your mum was Rh- .. are the first, second or third born? Stay strong and I do hope you get some good answers. big virtual hug. Sue
geraldine60291 Guest
Edited
Dear Mari
I recognise and share your frustration but I don't think a meeting would get us anywhere as we would all want to talk at once. I wonder if we each, as individuals lobbied our MPs , all at the same time, on the same date so that they would realise something important was on the agenda. I put it out there to you , someone whose history is not even included in her medical records as I was born just before the NHS came into being. I realise that this will probably not be the best time to lobby MPs as we are in this Corona virus crisis but if we decided on a date next year and all stuck to it? I look forward to 100s of replies saying that you think it is a good idea and are willing to take part.
Geraldine
I
geraldine60291 Guest
Posted
As a PS to my post I would be willing to compose the letter that we could all send on the same date. I have been involved in this sort of thing in the past regarding protesting against development and the reopening of a refuse tip in our area and have been successful so I sort of know how these things work.
jenny92300 Guest
Posted
omg - its not u its this site. i want to help but a post 7 years ago doesn't help. wtf?
jfer also jenny 923
jenny92300 Guest
Edited
we need to work together. there isn't enough to enact the "powers that be " to to research this condition, despite it effecting and disabling so many of us. they all believe it is resolved so therefore cured. what happened to us in the womb? fighting to live while our bodies were attacked?
what scientists may learn from us could help them years from now. we need to make them listen.
jennifer
RHbaby Guest
Posted
OMG, me, too!
I'm only just now researching results on the adult who was an RH baby.
I definitely think there is a direct correlation.
I can never feel.loved, I get abandoned often, I have depression, troublesome relationships, mind madness, sadness for no reason, and so on.
I have always felt like there was a dark thunder cloud enveloping me, no matter how fabulous life on paper was at the time.
i really do hope it's related so I dont have to take it all on myself leading to more self-loathing, and that there is actually a REASON, a cause for the misery.
PLEASE post or reply if you're RH or know anything about it... I will be so appreciative.