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
cheryl15248 Guest
Posted
I also survived without a transfusion. I was born in 1965, an have recently learned I was diagnosed with PKU, but low levels. I now have a grandson diagnosed with PKU, but low levels. I was always sick growing up, female issues, and I have fibrous displaysia of the skull. The tumor was crushing my optic nerve so I had to have the front left side of my skull cut out and replaced with plastic. Many complications, of course. I have so many symptoms of so many diseases, but all blood work always comes back fine. My neurologist at one point said I have narcolepsy and now Ehlers-Danlos. Endocrinologist tests for Cushings a lot, thyroid etc. I thought I was going crazy. If there are any weird problems, I seem to have them. I just recently started to research the Rh negative factor my mother has and came across your discussion. I try to take in so much information before a doctor's appointment, then I can't even explain it when I get there!
geraldine60291 cheryl15248
Posted
Dear Cheryl
Sorry to hear of all your problems what is PKU? I'm glad you have found this forum although it seems not too many people use it lately I don't know why. I was born in 1943 and had a brother before me and a brother after me die of the same problem. I have only recently found the grave of the last one who died in 1945. No research is done on this and the doctors just seem to brush it aside if you mention it and do not take you seriously. I find this absolutely madning. I did manage to get my doctor to tell me why it wasn't on my medical records and obviously I was born just before NHS came into being ancient or what! I do not believe it was added to my records however as a result of asking.
Best wishes Geraldine Keep fighting!
cheryl15248 geraldine60291
Posted
Phenylketonuria (also called PKU) is a condition in which your body can’t break down an amino acid called phenylalanine. Amino acids help build protein in your body. Without treatment, phenylalanine builds up in the blood and causes health problems.
In the United States, about 1 in 10,000 to 15,000 babies is born with PKU each year. The illness happens in all ethnic groups. But it’s more common in people who are Native American and Northern European than those who are African-American, Ashkenazi Jewish or Japanese.
cheryl15248
Posted
I mentioned the rh- factor to my endocrinologist at my last appointment. Sounded interested and said she would check into it. I'll see at my next appt what she has found out.
cheryl15248 Guest
Posted
I also survived without a transfusion. I was born in 1965, an have recently learned I was diagnosed with PKU, but low levels. I now have a grandson diagnosed with PKU, but low levels. I was always sick growing up, female issues, and I have fibrous displaysia of the skull. The tumor was crushing my optic nerve so I had to have the front left side of my skull cut out and replaced with plastic. Many complications, of course. I have so many symptoms of so many diseases, but all blood work always comes back fine. My neurologist at one point said I have narcolepsy and now Ehlers-Danlos. Endocrinologist tests for Cushings a lot, thyroid etc. I thought I was going crazy. If there are any weird problems, I seem to have them. I just recently started to research the Rh negative factor my mother has and came across your discussion. I try to take in so much information before a doctor's appointment, then I can't even explain it when I get there!
douglas16177 cheryl15248
Posted
Cheryl, which baby were you?
Doug
cheryl15248 douglas16177
Posted
i was the 2nd child
douglas16177 Guest
Posted
Hi Everybody, It has been some time since I have been on the forum. I have been doing more research on rh diseases and have something to share. As with so many of us born with rh disease i have been searching for answers to so many questions. I was born the four of three children, mom loss #3. I have always had problems with reality, social interaction, paranoia, depression and other stuff. So I came across a study saying we have a high incidence of schizophrenia. Although I don’t hear voices I do have some of the other symptoms. http://schizophrenia.com/prevention/rhcompat.html This is one link and I am wondering it there are others that feel the same?
Doug
cheryl15248 douglas16177
Posted
Thanks for the information. It's good to know there is some research being done!
I saw someone else is having the same issues getting back to the conversation in emails. Is that the reason why not many people get back on here?
vicki84913 cheryl15248
Posted
CHERYL, I also had the recent problem of not being able to find the current location of the site. I had to go to the website PATIENT.INFO and sign in. Also, when signing in, I needed to check a box that said i wanted to remain signed in. If I did not check that box, I would have the same problem the next time i clicked on GO TO THE COMMENT in the email notification. Once I checked the box that i wanted to stay signed in, i had to search for the group name: ADULT SURVIVORS OF RHESUS HAEMOLYTIC DISEASE. Then, there were several pages. so, i had to select the last (most current) page. From there, scroll down to the bottom for the most recent comments on that page. Now, when I access the site by clicking GO TO THE COMMENT in the email notification, it takes me to the correct location/comment. Hope this helps.
cheryl15248 vicki84913
Posted
Thanks Vicki, I did that my first time getting back on here. But this morning it went straight there from the email!!! So exciting when something works correctly! Maybe its a sign my body will cooperate today!
I guess i am really the 3rd child since my mother had a miscarrage that turned into a "mole" (a pre cancer tumor or something strange of course) before me.
I'm wondering if the lack of oxygen is why the lethargy is so bad and my metabolism doesn't seem to exist. i have been a puzzle for so many doctors my whole life, and some are interested and others act like its too much work and pass me along to someone else. I am in a very rural area and its a 2 hour drive to a few major cities so I usually try to suck it up before I give up and go to the dr. I do have an appointment in a couple weeks with my endo, and i'm hoping she did look into this.
rhonda62884 Guest
Edited
Hi friends...
It's like the medical field "eradicated" rhesus disease with that damn shot!
That's fine...but lots of us were born before that...and what happens to Moms who are given that shot ...like later in life.
We seem to all share some issues...and no one can tell us what to do.
I feel the autoimmunes are from overactive immune systems and most of us have Mast Cell Disorders.
Please stay strong and post here ....we will fix our damn selves!
sue72859 Guest
Posted
Hi Folks
I think for the first time I have had my total IgE measured. 292 KuA/L
I appreciate it is a pretty meaningless measure on its own .. the test report suggests 0 = 113 as normal range .. and sure I could be fighting a parasite etc. However I was just wondering if all of ours are permanently in the high range .. hence urticarias, rashes, allergies etc . One paper seemed to suggest it can easily go into the 1000's another that anything over 300 was pathological. .. so no idea if it is significant.
https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/hyper-ige-syndrome
In trying to google what most people felt were ' normal' ranges, I came across the site above. While I certain l am not there with Hyper Ige , I was interested that very loose jointed and bones that fracture very easily ( weak teeth) have been part of my reality ..... Just sharing...
geraldine60291 Guest
Posted
Hello Sue
I have never heard of this problem before. I suppose my immune system is fairly good as I was a farmer's daughter. They say farmers have the strongest immune system. Living in all the dirt I suppose!!! However I have suffered several bone fractures fairly recently - just recovering from a broken ankle.
All best wishes
Geraldine
vicky2822 Guest
Posted
I had a full blood transfusion when born to a RH negative mother in 1970.
My daughter has just been diagnosed b12, folate and ferritin deficient and whilst researching her symptoms I realise I have had many of them for years. I'm waiting to go and get a blood test to check (need to be off all supplements for 4 mths so results aren't effected) but to my knowledge I've never been tested for these.
Looking at all the posts to this thread, many of the symptoms mentioned by fellow Rh disease adults can be attributed to low b12 and folate. I just wondered if any of you have had your levels checked? Could there be a link between Rh disease and low b12/folate or ferritin in adulthood (maybe vit D as well)?
I know B12 is stored in the liver and when you are born your meant to have enough to last so many years ( with your body continually adding to the store when you eat) but if we never had this store due to the Rh disease could we always be on the low end of the range?
Very interested on your opinions. I cant find anything else online.
vari99922 vicky2822
Posted
i was a 4th child born to a mum with rh neg (i am rh +) didnt have transfusion & have suffered several autoimmune deseases all my life. didnt effect my sports too much when younger however now 60's i have no social life due to my illnesses as i only have about six weeks a year when i feel 'normal'. my older brother us the same, though my younger brother born mid 1960 had transfusion & my mum was monitored in her pregnancy so he is pretty good. mum had two misscarrages & one full term still birth. not enough was & still is not being done with regard to negative mums & positive babies.
drs look at me in puzzlement when i suggest my disabilities are due to blood groups. a frustrated human being (i am)
vicky2822 vari99922
Posted
i was a 4th child too. have they checked your b12, folate, and vit d. worth a look back at your blood test results.
sue72859 vicky2822
Posted
This is interesting. I am 64 .. I am least allergic to Dairy of the ten foods tested.. and so I drink milk in my tea and make yoghurt and make my own butter straight from a cow. . as I am seriously allergic to meat, and do not like fish or chicken. my B 12 and D3 ( I live in Kenya) are currently fine .. I have never been able to take vitamin pills for anything more that a few days without felling unwell ... they have been low at various points and never tested as I was growing up ...Interesting
mari71772 vicky2822
Posted
I was wandering why you were born with rh-disease because ghoGam injection have been available since 1966, unless your mother didn't want to be injected. You also mentioned being an only child and usually first baby is not affected because mother's blood is not sensitized until after birth.
vicky2822 mari71772
Posted
i was my mums 4th child, but the first with my dad (her second husband).
maybe they didnt realise it was a problem till too late. I dont really know much, just that I was very ill and had a full blood transfusion then incubated for 2 wks. My mum is rh- and I think im Ab+. My mum used to say she fed me on condensed milk and raw eggs to boost me up !!!
She has dementia now so I cant ask her for more info.
Healthsearch mari71772
Posted
That's interesting. I was born in 1974 and didn't have the injection either. How do they know to give it to you? Based on the blood type incompatibility? My brother was born in 1977 and they did the test wrong, thought he had it, and he was born 2 months early via Csection and had mild cerebral palsy because of it. How available was the injection at that point?
sue72859 mari71772
Posted
HI Mari.. I spoke to my cousin last night who was staying with a friend near London. She said her friend did 100's of transfusions in the 80' so there must be a whole group of 40 year olds. I was shocked. Seems like ti took a few decades to become truly routine and all the more reason for someone to support us and do the research
sue72859 Healthsearch
Posted
As far as I know testing the rhesus factor of would be parents as part of prenatal care is now routine. Like Vicky my mum was Rh negative and I am AB+ve and I was the third or fourth child. I am not sure about the other way around. the child -ve and mum + ve. We all have so much to learn.. Vicky I also so relate to the lack of a maternal relationship with my mother and almost died of Penicillin when I was 6.
mari71772 Healthsearch
Posted
It is the rh-negative mother who should be injected. six months into the pregnancy she should receive the first injection and after giving birth the second. My friend's daughter just celebrated her fiftieth birthday, her mother had the injections when pregnant with her in 1968, she had three more children, had injections with all pregnancies, all her children are healthy, none of them had rh-disease or any health problems. My fried has seven grand children now and they too are in perfect health. She had her children in Birmingham, England.