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
chris50782 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...
twothirdsdutch Guest
Posted
I posted here a few years ago deathly ill from a multisystemic health crisis. I was so ill I planned and paid for my funeral. I am better as of 7 months ago with the start of CoQ10 supplement and a bunch of other supplements and careful diet.
I have a theory that Rh- and or Rho-GAM damage mitochondria and has a whole system impact on the body. I am better due to my own research and take a lot of supplements but have followed a muscular dystrophy treatment protocol and improved a lot with it. This needs to be studied a lot more especially since Bayer is distributing Rho-GAM to the WHO. It’s is now on the global list of top 10 drugs that are beneficial. I would agree the drug manufactured with matching blood /plasma doners is a benefit, but when it’s not a match, we with our health problems are the result of this negligence. I hope a researcher might read this and start some testing.
Blessings to all on this journey,
T.
dianna33495 Guest
Posted
dianna33495 Guest
Posted
All my illnesses.
Liver disease,now cirrhosis
Hypoglycemia- not diabetes
Blurry vision
Peripheral nueropathy
Igg deficiency
Small blood vessel degeneration in the brain
Twisting limbs
Mennorahgia
No energy
Bad depression
Panic disorder
Anxiety
Thrombocytopenia
Neutropenia
Flat foot
High blood pressure
Mild cognitive behavior
Uncontrollable body temperature
Hyper senses
Hyper reflexes
HyperSensitive skin
Enlarged lymph nodes
There's more
All this at age 55
dianna33495
Posted
My mother passed away at 26 with adeno carcinoma of the stomach
No other information on her
All medical records secured
Can't get into them
Now I may no why
What a shock to find out one day you were born with all these health issues
I carry alot of anger
Thank God for this sight
To know i am not alone with my illness
No one understands unless they have it
Thankyou all for how much you care
Forever grateful
mirela22414 Guest
Posted
Hi, I am 23 years old and I am the second Rh+ child of an O- mom and AB+ dad. My mom did not receive any antigen treatment and of course her 2nd pregnancy was very high risk and she spent most of the pregnancy in the hospital and then induced at 36 weeks. I've been having health issues all my life. Depression, joint and bone pain, insomnia, gut issues, light and noise sensitivity, fatigue, blurred vision, anemia, hypoglycemia, dermatitis, blood in the stools and other problems. With time all the symptoms got worse, I couldn't watch TV or go to parties because the light and noise irritated me, making me scream involuntarily. If I would sleep in or wait to eat after I woke up, I used to drop on the floor , with my feet and arms numb unable to move till I got a snack. I've been doing research on my own to help me understand better what is going on with my body, asking notes when my symptoms got worse, food that I ate, activities and other stuff that could influence my behavior and symptoms. I came to a conclusion that Celiac might be the cause. it is an autoimmune disorder, therefore could've been caused by Rh disease. I did take out gluten from my diet and still had some symptoms, then I also quit sugar and sugar substitutes which made my life so much easier. I do not experience any joint or bone pain, my gut problems are almost gone, my dermatitis is much better, no insomnia or severe depression and Ican watch TV for hours now 😁. Anytime I accidentally eat sugar or gluten my symptoms come back and start going away in usually a week.
I've been married for 2 years now and now we are thinking to extend our family. I am very worried that my health problems will affect my children.
tra10297 mirela22414
Posted
Here is my previous post.
Hi i too have the same illnesses as you. My mum who is RN didnt get any injections while she was pregnant with me and i also have my dads blood group O positive. Is there tests you can do privatly to investagate this . Reading what others say here i seem to have a lot of the same health issues that has gotten worse from teenage years. I too had a notion a few years ago to try to investagate this when my daughter was having her firstborn and her blood is RN. She had to get a few Anti-D injections and my mum is insisting my illnesses are because she didnt get this injection. Also i live in Northern Ireland and back in late 60s-70s in Ireland there was something wrong about this whole RN and this injection. Its good to know a few others are also quering this. Thanks.
mirela22414 tra10297
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vicki84913 tra10297
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Hello tra10297. I saw a previous post where you asked “what is kernictus?”. I can’t currently find it. But I am responding to that post. I was born in 1950, the 4th of 5 children born to an RH-mother and an RH+ father. I almost died at birth & had exchange transfusions. My naval collapsed, so I have several scars where the doctors were eventually successful in exchanging my blood. I have had hearing loss since birth. Also, I have had dental enamel issues with my primary teeth as a child. Other than that I was healthy as a child. Very active. At age 29, in 1980, I was working as a grocery checker. The cash registers were set up like 10-key adding machines in those days so grocery checking was a repetitive movement with a fixed position of the head—now they use scanners, so it is less, or no longer a problem. Anyway, at age 29, I developed spasmodic torticollis (information is also found under the name Cervical dystonia). It is a movement disorder—a form of dystonia, believed to involve the basal ganglia part of the brain. I was told by my doctor that I would have the condition for the rest of my life. After leaving that job, I was able to eventually gradually recover from the condition over the next 7 years. Then in 2011, I was working at a job where I did a lot of typing (with my head fixed in the same position as the grocery checker job) during the day & also had a project going on at home—nailing hardwood floor in my house, which also required the same fixed position of my head. So, lots & lots of time doing repetitive movements with my head fixed in the same position. The spasmodic torticollis came back in 2011—after a 25 year remission. It has been another 7 years since then and I am experiencing the same path to recovery that I experienced from 1980-1987. I have come across articles linking RH hemolytic disease to kernicterus. I am not a medical professional. I have read that the blood-brain barrier is not fully developed in a newborn. RH hemolytic disease results in jaundice & very elevated levels of bilirubin in the newborn. The excess Bilirubin, which is a neurotoxin, deposits in body tissues and also crosses the blood-brain barrier & is deposited in the basal ganglia area of the brain. They need to do exchange transfusions over a longer period of time than would be involved in a regular transfusion because the bilirubin is deposited in tissues & it is only able to be removed in a slower process. Autopsies have been done on RH babies who have died & this area of the brain has been shown to be stained yellow from the bilirubin deposits. I believe kernicterus is related to choreoathetoid cerebral palsy. I found this medscape article: https://emedicine.medscape.com/article/974349-overview. I had to sign in to medscape in order to view it. It says this: The 2 major complications of hemolytic disease of the newborn are bilirubin encephalopathy (kernicterus) and late anemia of infancy. It also says: A high bilirubin production rate is thought to result in rapid transfer of bilirubin to tissue, causing high tissue load, in which case any small further increase has great potential to enter the brain. Because the total serum bilirubin represents not only bilirubin production but also distribution and elimination, it is not an absolute indicator of risk of kernicterus. This Wikipedia link (https://en.m.wikipedia.org/wiki/Kernicterus) says: Kernicterus is a bilirubin-induced brain dysfunction. So, like I said, I was the 4th of 5 children. My older sister (#4) had to wear braces on her legs for about 1 year while she was learning to walk. Child #1 & #2 were OK. #5 also had exchange transfusions, but we had moved to LA county recently & she had access to better medical care. In my case, I believe that my movement disorder, is linked to the bilirubin deposits at birth in the basal ganglia part of my brain. I have spent a total of 14 years of my life recovering from spasmodic torticolli/dystonia. Currently, I am still struggling with it since it recurred in 2011, but am well on my way to recovering for the second time. I know one thing for sure—I cannot take on any projects that involve sustained, repetitive movements with my head in that position. Hope this helps.
Nico55 Guest
Posted
I just stumbled upon this site and am wondering if somethings I have struggled with could be related. I vaguely remember being told that I had to have transfusion after being born....but not something that was talked about or explained. I'm guessing because it was an unhappy experience. Well one medical records available at this point. I have had poor appetite in my childhood. Always had low energy and some anxiety. Being born in the 60's, guess what I was given Hep C from blood transfusion. Don't know if my symptoms are related to that or the RH factor. Of course now no medical records anywhere and very little on subject.
Sgalindo1 Guest
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katherine88455 Sgalindo1
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Of course there is a correlation. I am an Rh baby. My sisters and brothers(all except one) were Rh babies. Born in the 50's and early 60's. We were all transfused at birth. Several of us were born super sick and had to be incubated. We all have anxiety, depression, attention problems, memory problems, and joint problems. One of my brothers is deaf. Doctors don't know everything about everything. You are a member of a club. Don't despair. Take care of your health. Knowledge is power. Take vitamins and other supplements. CBD oil is great. Try to get some exercise. I take melatonin before bed to help with insomnia.
mmccray100 Guest
Posted
Born in 1947, I was one of the early survivors of this RH-/+ incompatibility. I, too, had a full body blood transfusion and spent some time in the incubator before I was allowed to go home. I was not born early. I was a first child. My younger sister and brother where carried to birth without problems.
I've had quite a few health problems but never even thought of the RH situation until recently. Reading all the letters in this forum has given me new insight into how my time in the womb may have affected my entire life.
The following I'm mentioning only because others have reported them in their own lives; I had my tonsils out when I was in kindergarten. I had hearing problems but wasn't diagnosed until I was in my early 20's. I've worn hearing aids since. I had constant problems with ear infections as a toddler. My hearing problems were blamed on these infections.
In my 40's I began having problems with my feet. It started out with mild discomfort when lying on my back with the covers over my feet. I became a side sleeper because the discomfort was enough to bother me. Over the 30 years since then my feet have become progressively worse, to the point that I now cannot walk barefoot (feels like I'm walking on rocks and have pain even with shoes. I cannot begin to tell you how much money I've wasted on shoes and insoles to find comfort.
I have Peripheral Artery Disease which is a form of Arteriosclerosis. I've had 2 vein graft surgeries (in the same thigh) and now take blood thinner. I have High Blood Pressure. I have had pain in my shoulders for several years, diagnosed as Bursitis. I've had bad back pain since 1974 with recurring sciatic pain down one or both legs. I can no longer walk any distance due to pain in my feet, lower back and hips. I've had Carpal Tunnel release on both wrists and Cubital Tunnel (funny bone) release on my right elbow. I've had surgery on 3 fingers to take care of Trigger Finger. 6 years ago I was diagnosed with Polymyalgia Rheumatica. This is an auto-immune disorder for which little is known. Prednisone knocks it right out but it is not a cure. I believe it has returned and will be seeing a Rheumatolagist soon.
Now, I have no idea if any, some or all of these conditions are caused by my time in the womb, but a lot of them mirror what I see in this forum.
What I also see in this forum and do not suffer from are any of the mental/depression problems. Nor did I have any particular physical problems as a child. I've always been a "doer". I've worked hard all my life and was semi-successful in my own electronics business.
I'm seeing my Primary Care Physician in a few days and will, for the first time, report my RH-/+ status.
katherine88455 mmccray100
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Interesting. Please keep us updated on what Dr. says. I hope he doesn't make snap judgments during the office visit. I think this merits a bit of study. You know what though? I have a sense of relief with this new knowledge that maybe who I am and what I've struggled with isn't really due to anything I did or didn't do. It just is my new reality. My brothers and sisters all wondered what was wrong with us. When we compared ourselves to other relatives and even our own parents, we felt lacking. Now, well, I think mystery is solved. I'm peaceful with it. Onward.....
tra10297 mmccray100
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