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
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boobooki
Edited
then my midwife got concerned as he seemingly was not gaining weight, again she just said : eat more pasta.
I was not given any blood tests apart from 12 week routine test, and was not made aware of the results.
i went into spontaneous labour at 37 weeks and had my son 4 pound 11 ounces- very small even for 37 weeks, it was deemed that my placenta had possibly stopped working, i did not receive any blood test after my sons delivery and was not made aware if a coombes test had been carried out.
my son was born aneamic, with a hernia on his belly & didnt suckle and so could not be breast fed, he instead had my milk and then was fed for two weeks in hospital via an NG tube before i was able to ween him onto a bottle and get them to let us out
he suffered terribly as a child, at first they thought he may be deaf but
boobooki
Edited
I absolutely feel like i am banging my head against a wall, THEY (the NHS) are assuming my son has a 'chromosonal abnormality' and are very much on my back about having him enrolled on a Dysphering development disorders study (thousands of pounds of tax payers money) so i sent them a letter asking them to use his blood that they already have just to test my theory that in fact my son has rhesus disease, his consultant shurugged off my concerns saying "i dont think that plays any part here" and now his genetist has completely fobbed me off sending me a letter 8 weeks after my initial query stating "i do not think that rhesus incompatability can explain ************* problems but i can understand why you asked us to consider this" well if they can understand why will they not test my sons blood???
i have contacted every department my son has ever been to throughout the nhs asking them if my sons blood group is on their system and they all say they do not have it! now surely if a coombes test had been carried out surely they would have it on record? so did they even carry that out?
It is also worth noting that, my son as a child suffered from seizures and muscle spasms, which were dismissed until he had a muscle spasm infront of his developement check consultant, and so i have it in writing that they saw this and dismissed it.
My sons consultant also blatantly told me that my sons blood test results had come back absolutley fine, then when i received a letter she had written to his genetist about the appointment she goes on to say his ferritin levels are borderline- so borderline aneamic then!!!!! but didnt even think to tell me this so i could as a good parent up his iron content.
BANGING MY HEAD AGAINST A WALL AND SO WILL HAVE TO HAVE A PRIVATE CONSULT WITH MY SON JUST TO SEE IF MY SUSPICIONS ARE CORRECT.
they are all very hush hush about it, and wont oblige to just letting me know what my sons blood group is.
as a child did you have a blood transfusion?
have you heard from anybody else with the same as yourself?
what are symptoms in later life? as i am trying to do all i can for my son but feel i am getting no help.
christine64233 boobooki
Posted
Let me know your son's other symptoms if you wish, and we can see if there is an overall pattern, as seems to be emerging. I wish you well. 😀
Â
adag boobooki
Edited
I was born in the early seventies with RH disease. I also had an alternating eye turn until it was corrected by surgery in my 30s. I've struggled with anxiety and depression for most of my life. I'm just starting to research the impact of RH disease on adults.
adag
Edited
I had a blood exchange procedure when I was a boy. My mother used to say: "they had to change your blood out one teaspoon at a time." I was in the incubator for some time before I could go home. They said: "You were a very sick little boy." Seems like we really had to fight to come into this world.
katherine88455 adag
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I'm glad I found this forum. I was an RH baby as well as my brothers and sisters. We were all given blood transfusions at birth. We all are "different". One of my brothers is deaf and severely autistic(they considered him retarded back in the day, but now we think he is autistic). My siblings and I have all struggled with anxiety and depression as well. I came to the internet this morning to see what the long term effects of being an RH baby(of the 50's) were. I was wondering if my irritability and short term memory problems and inability to concentrate were due to my Mother's blood trying to kill me! My dad is practically a genius with super memory at 87 and my mom was a chemist with a 6 year degree from Berkeley. None of us kids ever did that great in school or in our life work. My sister has serious RA. My other sister is manic with a little depressive in there. My little brother had learning disabilities also. He died at 53. My big brother died at 53 too. This is all very interesting to me. I feel relieved that my inability to concentrate and remember things might be due to months of attacks on my blood in utero.
tra10297 adag
Posted
I did copy and paste my text of the above to a few people on this site. I would be very intrested in knowing did you come to any conclusion with your investagation.
alexandra_70180 katherine88455
Posted
Myself as well as my two sisters received transfusions at birth. My sisters both received blood from family members. I received mine from a donor. I inturn am the only one of the three with Multiple sclerosis. I was dx'd at age 34, I am now 47. Thankfully am still ambulatory. My eldest sister was 55 when she passed but suffered most of her life with bipolar. Glad I found this site. I strongly believe this may be the reason I am the only with this disease in my family.
mirela89245 katherine88455
Posted
I feel your pain. If someone like me, without important parents, with high studies, and felt the pressure of studying, and studying; I just imagine you and your siblings, how much you must have suffered!
My memory problems started as a teenager and have gotten worse with the time...Now I am 43, and feel so bad about the fact that I cannot remember much!...The focus also is a problem- I have the tendency to start something and to go to another part of the house, and start doing something else...and so on...
  Â
a02091 mirela89245
Posted
Wish there was a way to get my memory back! Super frustrating! Best of luck to you all! Blessings ~ A
vicki84913 a02091
Posted
Here is a good article. But not a lot of information about adult survivors:
https://www.nature.com/articles/7211157
kim84686 adag
Posted
i am the same i was born 1961 and they did nothing about this then.
megan82951 alexandra_70180
Posted
I just found this forum this morning after discovering my Rh factor story.... I was diagnosed with MS over the summer and I am also 47.
so many of the things I dealt with as a small child no one could ever explain. I can’t believe I figured this out.
christine64233 Guest
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I am the mother of an officially undiagnosed 32 year old. She was my second child and I was advised not to have any further children. In spite of my daughter having jaundice in the first week of life and knowing that my anti D labels were very low, no transfusion was recommended and no real monitoring of my daughter took place. The result is that she has always struggled with life....regularly tired, difficulty with school and getting on with her peers, IBS, panic attacks, anxiety, poor muscle strength, poor sustained attention, more recently OCD traits. She is a lovely girl who just wants to live a normal life. I feel that if she had been monitored properly at birth, all of this would have been avoided and she would have been able to live an independent life like her elder brother.u
selina26483 christine64233
Posted
Hi I am a rh negative mum to a 18 year old daughter who did get light treatment with jaundice, when born .
Her noticeable problems started at high school age 13 , just as you described , she never attended high school 90 persent of the time. A pediatrision thought she could have Gilbert's syndrome , never confirmed but did say a genetic test could be done to determine it , anxiety problems , and I have been wondering if any autistic traits could be what's up ,
She was diagnosed at 15 with a hearing loss . ( had all life)
During this time she had high billirubin readings but ignored and more recently anemia , I am still racking my brains why this has all happened why at puberty would this all happen , I will continue to look for reasons as my daughters future has been robbed and no one takes it seriously and finding it more difficult to get help for her as she is 18 now . I just thought everything you mentioned were too similar and hope you and your family are doing well but I think this is a battle worth fighting about for the sake of our suffering kids .
Regards Selina
shay72273 christine64233
Posted
Guest shay72273
Edited
I'm 48 and also have the same symptoms as you. I've been trying to get a diagnosis for most off my life. They are now saying it's Aspergers.
My life has been so depressing all because no one would help.
tra10297 shay72273
Posted
tra10297 christine64233
Posted
Samisha christine64233
Posted
I'm a 40 yr old rh negative mother of 2. This is the first time I've become aware that this disease existed! I just recently learned the rare characteristics and similarities of people that are rh-negative, and have been spending hours researching different articles and web sites (I guess that's what they are.) I'm not very computer savy but I've dug so much to know that we are definitely different... however this is the first place I came across any information about it actually possibly responsible for physical health problems! This is my first time being in a forum?/ blog? like this, i don't know if you actively participate in this still but am hopeful. I have many of these health complications and my 21 yr old daughter does too. Its rare for our problems to get diagnosed and we suffer. Hope to hear from you soon.
geraldine60291 Samisha
Posted
Dear Samisha
Yes this site is still active and, I believe, a great comfort to many as a light has been shone on many of their health problems. It is just a pity that hardly any research has been done. I was not aware that those who had had transfusions still had problems as I managed to survive as a rh baby without them but, apparently, I'm something of a rarity.I hope it is of some help to you too.
douglas16177 geraldine60291
Posted
Doug
Â
brenda03504 geraldine60291
Posted
I consider myself fairly lucky to be a survivor! Â I am also very thankful for this forum!
geraldine60291 brenda03504
Posted
I have only just picked up your notice. Â At Last! Another survivor who did not have blood transfusions. Â I began to think I was the only one. Â Life can be tough at times but I believe that makes you appreciate the good times even more. Â I am going to the doctor for a medication review in August and am going to tell them that this should all be on my medical records. Â I hope they do not dismiss it as unimportant. Â It is VERY important to us survivors to get some insight into our problems.
Best wishes
Geraldine
kim84686 geraldine60291
Posted
geraldine60291 kim84686
Posted
Wonderful - another miracle child! Â Now I know there are at least three of us walking around despite everything being against us. Â Tough as old boots we must be.
God bless.
geraldine60291 douglas16177
Edited
Geraldine xx
geraldine60291 kim84686
Posted
Hello Kim
I am missing all the correspondence with adult survivors and hope I get a reply to this. I have written to Dr James Le Fanu asking for his thoughts about Rhesus Haemolytic disease. He writes in the Daily Telegraph every Monday and I'm hoping I will get feedback from him.
Best Wishes from Geraldine
kim84686 geraldine60291
Posted
vicki84913 kim84686
Posted
Hi Kim, I have been following this site for awhile. I am the 4th of 5 kids. Had exchange transfusions in 1950. Hearing loss on one side since birth, problems with enamel on primary teeth, at age 29 I developed dystonia. I am curious what your research has turned up. I understand that RH is linked to dyskinetic cerebral palsy. The bilirubin crosses the blood-brain barrier & deposits in the basal ganglia portion of the brain, which is the movement center of the brain. They have done autopsies on the babies that died & this area of the brain was stained yellow. The cells that are stained yellow die. I read that RH is linked to dyskinetic cerebral palsy. My sister/#3 wore braces on her legs for 1 year when she was learning to walk—she was born in 1946 & did not have transfusions. But she learned to walk & has not had problems since. I believe that my dystonia, which I acquired at age 29 is linked to basal ganglia problems from birth. So, movement disorders seem linked to RH. Also hearing loss and primary teeth enamel problems. Anyway, I’m really OK. I was told by the neurologist that I would have dystonia for the rest of my life. But, I have had 2 bouts of it (1980-1987 & 2011-2018). For me, I need to be careful of doing repetitive movement with my head in a fixed position, which brought on both bouts of dystonia. I am getting over it for the 2nd time. I will avoid that now for the rest of my life. I’m glad this forum is here. Thankyou for sharing.
deon_74952 vicki84913
Edited
My husband has suffered with MANY debilitating symptoms for the last 20 years. I have often wondered and researched if it was linked to him beginning life as Rhesus Hemolytic survivor? He did have an exchange transfusion as a newborn. His was extremely dyslexic as a child (well, still is, I guess?!). At 17 he had his first bout with kidney stones...which started a new way of life for him. Since that time, he has passed more than 400 kidney stones. When we first married 15 years ago, I immediately noticed that he seemed to have slight muscle tremors, more pronounced when he was resting or asleep. He suffers from constant fatigue. Over the last 10 years, those tremors have progressed to be so horrible that he cannot sleep. He has been incorrectly diagnosed over the years with low-Parkinsons, non-verbal turrets, and most recently with a bad case of restless leg. My irritation with this is that it's not just his legs, and it's not just at night. Years and years ago I noticed him continually moving/twitching his shoulder and jerking his head in minute ways repeatedly. At night, though, they are all SO BAD. His legs jerk and twitch so bad that it's like he's having a seizure. A few years ago, he was going to try to get more exercise and as a teen he like to jog, so he started one day by lightly jogging a half a mile. The next day he was sore but decided to push through and tried to jog a half mile again. He ended up limping home. Long story, but after days of knee pain, he went to the doctor, who sent him to a bone specialist and they discovered he had fractured BOTH his knees! They also found out that he has incredibly weak bones and diagnosed him with osteopenia. They couldn't put him on a calcium supplement to help because high calcium would only make his kidney stones worse.
He's been on so many different neurological medications over the years, from dopamine inhibitors to dopamine increasers, to anti-seizure meds, and also has been on anti-depressant meds for the last 10 years. We've seen so many specialist, and urologists, and endocrinologists, who do blood work and then shake their head and say they don't know. A few years ago, he just said he was done. He was tired of spending money and time for someone to tell him they had no idea. Once, he begged an endocrinologist to do surgery because he had so many symptoms of a parathyroid tumor. But his blood levels are never acutely raised, and they all stop there. Nothing definitively points in one directions.
Today, while again researching adult complications from being born the RH factor and having an exchange transfusion, I stumbled across a connection between that Cushing's Disease. My husband has MANY of the symptoms. I am going to beg him to go back to an endocrinologist and ask them to run every single test for Cushing's before they rule it out.
In looking up Cushing's, I was led to this site! When I read your post of Dystonia, I had never heard that term and looked it up. The Wikipedia description floored me. Generalized Dystonia best describes him.
My husband is a cop, and so he cannot stay on heavy pain meds or take many neurological meds. After a few years of sadly watching my husband's quality of life diminish and having one doctor tell him he was facing renal failure in the future from constant trauma to his kidneys (he has kidney stone removal surgery 6 times because the stones were too big or too numerous for him to pass), I finally today feel another smidge of hope! I am hoping that we can take this info back to a Pituitary Specialist and have them recheck everything...and that this time they will find something! It seems like it would be connected that the RH factor can attack and seep into the fetuses brain, and the pituitary gland is in the brain and affects so many other body functions! The adrenal gland is part of it and the adrenal gland produces a hormone called cortisol. Incorrect cortisol in the body causing Cushing's Disease, which cause kidney stones and fatigue and a bunch of other things that are hard to diagnose as a connected problem! Pituitary gland problems also affect your intestines ability to absorb calcium, which means it filters it out of your body...through your kidneys!
My husband's list of symptoms (that I can recall right now!) are as follows:
He is 38. He is average height and build, maybe slightly overweight? 6' tall, 200 lbs.
He suffers regularly from:
Chronic kidney stones
Fatigue
Muscle tremors
Memory problems
Low testosterone
Low libido
Dyslexia
Depression/Anxiety
OCD
High Blood Pressure
High Cholesterol
Osteopenia
The number one problem we have had over the years is that doctors run blood tests and nothing specifically jumps out at them as being extremely high or low. So they dismiss it. Has anyone else experienced this? ...Oh, my word, I just now wondered if there was possibly also a connection between misrepresentation in his blood and his newborn blood condition?!
Anyway I wanted to share our experience and our journey and where we are and see if anyone else has a similar story?
geraldine60291 deon_74952
Edited
Hello deon
I have just read your report on your husband's many problems as you struggle for a reason and proper diagnosis. I am so sorry that you have had no real help from the different specialists you have seen. By comparison I have suffered little I suppose but it is only fairly recently that I too found this forum and it has helped. I was always a very anxious child, continually having to be put on 'iron' medicine and having time off school. After my second child I suffered from severe anxiety and depression which, luckily, does respond to medication. I had breast cancer at 47 years but that is OK now, had a hysterectomy at 53, operation to remove my gall bladder (full of stones) just three years ago. I still suffer from fatigue which can be very debilitating and which no-one can really understand - I just want to sleep and sleep.I too have high cholestrol but it certainly is not my diet that causes it I have recently been put on thyroid tablets but they have not had any noticeable effect on the fatigue. Really,. being born with rhesus haemolytic disease and its possible consequences has had little or no research. I trust that you can persuade your husband to see the pituitary specialist and that they can help. I was born before they had started blood transfusions so I doubt very much if the fact that i was born with this disease is even mentioned in my medical records. All best wishes
Geraldine
nicole_60576 kim84686
Edited
vicki84913 deon_74952
Posted
Hi Deon, I have Dystonia & I understand that there are no tests that confirm it. It requires a Neurologist with special knowledge of movement disorders. I was lucky to be diagnosed soon after I got dystonia in 1980. But, I understand that many people go for years—even decades—without diagnosis. I have been told that if you believe you have Dystonia, you should go to a Neurologist who specializes in movement disorders. That person will understand the link between RH Hemolytic disease of the fetus & newborn and Dystonia.
vari99922 deon_74952
Edited
I was born in the 50s to a 0 RN mother (dad was A+). my mother always told me my blood group was also RN however i found out at age 22 that i was A+ like my dad. meaning i had rhesus disease. I am 5th child 3 babies died b4 me. I have 2 living brother who like myself gave suffered numerous illnesses. my elder brother also suffers kidney stones. i had to retire early & have suffered tremendous fatigue all my life. & been diagnosed many autoimmune disorders:
Primary Sjogrens syndrome
M.E.
Fibromyalgia.
Nephritis Syndrome.
Oesophical dysmotility.
Polymyalgia.
I feel the RN disease is tge cause of all my autoimmune disorders, as it would make sense that as a foetus fighting off my mothers antibodies I have grown with my own antibodies now attacking me too.
i wish someone would set up studies & research into this, I have been very sports orientated all my life however my older body cannot cope anymore all enjoyment gone from my life. most maddening thing of all it is an invisible disease & i dont look ill.
geraldine60291 vari99922
Edited
About time all of us sufferers got together for some sort of a rally as it appears no one is interested. This web site is pretty useless too. It jumps all over the place. Can't someone fix it and us!!!! Geraldine
sue72859 geraldine60291
Edited
HI Deon... so sorry for your troubles. I was also born in 1954 with full blown and transfused at birth . I am pretty sure I am AB+ and my mum negative. I finally have learned how to explain myself and as I went for a raft of hugely expensive allergy blood tests today , I said to the lady " I am an adult survivor of Rhesus Haemolytic disease; she said 'Oh your liver is seriously compromised' As I went on and said my eyesight is getting rapidly weaker, she said, 'Oh , that is your liver." . . and I am thinking wow I am having a genuinely sensible conversation with a medical professional. I agree no one has been interested in finding out exactly how our livers are compromised because often the normal tests come back fine. I wonder if there is an interested researcher who would like our case histories. I do highly recommend supportive energetic approaches like qi gung, Tai Chi and other holistic movement, energetic and breathing exercises, whatever suits, which are free once you learn them. Also Bicom and Acupuncture help me , and I find herbs are more tricky.. very easy to overdo and upset the delicate balance we live in. And yes everyone says I look great for 64 so it is hard for others to realise how on the edge we feel and how much we are left to self manage. Give yourself a huge pat on the back for defying the odds and for being alive to share your beauty, insight and courage. Sue
mary55438 vari99922
Edited
I was born in 1951
mom RN and dad RP. I was transfused at birth and again at one yr old with my dads blood . I'm shocked I found this site. I had my hip replaced in 2017. I have problems with focus, memory, a bit OCD, small repetitive movements, fibromyalgia , diabetic but have it under control with diet, allergies have been off the chain the last couple years
I'm blown away with all these posts. I've told many doctors that I'm a RH baby and none seem to know anything about how it can affect my health?
sue72859 mary55438
Edited
Dear Mary
Welcome and I am so glad you found us. Well done to getting to almost 70 having been transfused, you must be doing something really right. I tell folks I seem to be one of the older ones.. of whom have found this site. I keep talking to doctors to ask it anyone is interested in finding out more about just how we were compromised. Maybe this year I will make a real push to do so as like you, allergies are getting more frequent.. had a glass of Australian wine the other day and the whole body took off in massive welts. Thankfully the sun had shone and there was hot water in the system to jump into a hot bath with relaxing lavender based bath oil and calm it down from going full blown. A friend of mine said there are 15 unpleasant adulterants they do not have to declare in most wines and they put the wine through fish guts .. etc. so will focus on a rare glass of organic or Israeli Kosher. .. the ongoing dance to find our paths to staying safe but still enjoying life. I am allergic to antibiotics so have to avoid operations whenever I can. I am glad you came through surgery safely. Well done you Keep going and I am daily grateful they had figured out the transfusion in time to save our lives.
mary55438 sue72859
Posted
Hello. I went through a couple years breaking out in hives. one thing I figured out it was crashed red peppers made me break out. I went to the web to find that there are food triggers connected to what you are actually allergic to and peppers was a trigger to a family of trees I'm allergic to. I'm a vitamin and herb supplement nut. And yes I walked out of the hospital the same day with my new hip and its great.😊
mary55438 sue72859
Posted
sue72859 mary55438
Posted
Dear Mary
How do you find out your allergies?.
The London Allergy clinic initially seems very in depth and expensive for someone living in Kenya as they go on to give you the allergen and have you near a hospital to take care of the effects ......so I would need to stay in London for long
I think the IGE blood tests are fairly spurious .. I came out very intolerant to all vegetarian foods tested ( the doctor did not understand why I am still alive) and hardly allergic to antibiotics which has not been my life experience, having almost died aged six and had serious rashes and struggling liver and kidney the other 3 times I have touched them. Overall IgE 292, 8 points short of 'pathological.' on the day of testing.
I am yet to get systematic in cutting out this or that food. .. my diet is pretty simple
And yes have long avoided South African and other wines heavy on sulfates.
I did not drink any alcohol at all until 49. Then a homeopath recommended the occasional light beer to flush the kidneys and I do enjoy an occasional social glass of wine
Any advice on accurate allergy detection welcome
Thanks
Sue
mary55438 sue72859
Edited
I'm retired and I have full medical, dental and vision benefits. I go to Kaiser hospital for my medical care. My hip replacement was covered. I pay $5 for Dr visits and $7 for rx. I just read someones post and they mentioned they have TMJ. I have that also.
mary55438 sue72859
Posted
I had my blood work done in the allergy dept. at kaiser.
cheree04039 deon_74952
Edited
hi my daughter was also born with rh disease. it was mild but had jandice and no blood transfusions. but she has had stomach problems and food sensitivities her entire life. In the last three years she started to get really sick gaining a lot of weight, started having joint pain muscle weakness and severe stomach problems. I force the doctors to do testing because I thought she had Cushing’s disease which in fact the doctors are pretty sure she has what’s called episodic Cushing’s disease, caused by a tiny tumor in her pituitary gland. it took us over a year to get the proper testing because sometimes her test would be normal and sometimes they would come back with high cortisol it took several test to get the high test because the tumor would turn on and off. we are now on a medication called ketoconozole that helps with symptoms are next step is to get her officially diagnosed and have the tumor removed. when I saw your post saying that Rh disease and Cushing’s could be connected I was floored because that’s why I was looking into her having our age as a baby because I thought they might be connected too. please have your husband tested cushings is A horrible disease that will eventually kill you if not treated.
let me know if your husband ever got tested. There are a lot of great support groups for Cushing’s on Facebook they’ve been a lifesaver for us.
mari71772 geraldine60291
Edited
Hi, you are right there is not much point reading the blog. we should arrange a meeting and talk face to face. Sometimes it seems to me that most people don't have any idea why their children are born with rh-disease. Is this because medical profession seem to prefer to keep rh-negative mothers in the dark. These people are left to live in fear. Waking up in the middle of night heart racing, unexplainable stomach pains and being sick all night, losing three stones in weight, skin turning yellow, feeling dizzy and list goes on. what does a doctor say, ' everything seems to be fine , it is probably phycological. '
I am sorry it just make me so angry that people are not heard. yet we are told we have a voice. Nobody has listened to me but I never stop trying.
pam69215 vari99922
Edited
i am shocked reading all these, i didn't know anything about rh- and pregnancy til i had my daughter 40+ yrs ago. i had the shot after her birth and 3 yrs later had a son. son has had problems all along. adhd, behavioral, type 1 diabetes at 6 1/2 yrs old. now assessment last week says he is type 2 (?) bipolar. my daughter was diagnosed crohn's 3 yrs ago. neither ever received any follow up with the rh thing. all their medical problems currently going on made me look up this info. has never been brought up for either of them.
pam69215 mary55438
Edited
i just found this too, wow never thought of it
CheryllMc60 geraldine60291
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I am new to this group. I have been trying to find answers to my health issues for some time and have just now thought to research my RH issue. I am the fourth child of a B- mother and an O+ father. I was born in 1960 without the exchange transfusions, and my mother did not have any injections. The doctors monitored my mother's levels and were prepared to do the transfusion, but decided the levels were not high enough to warrant it. They also monitored my older sister, who is third in the birth order. My sister has also been searching for answers to her health issues. She had no idea that she also was affected by the RH disease and monitored in utero.
I was extremely ill the first year of my life, in the hospital 3 times, very anemic and dehydrated. I was a sickly child for many years. I have always dealt with IBS, depression, fatigue. anxiety and many other issues. I have developed asthma and migraine headaches as I have gotten older, not to mention the memory problems.
Finding this site has been very validating and given me hope. Please keep it going!
Cheryll
peggy40295 deon_74952
Posted
My husband's mother was RH- Negative (She passed away many years ago). My husband has always been "different". Even in his own words. We have been together since teenagers, and I knew his mother had around a dozen miscarriages and 2 babies that passed away after birth. But I had no idea that the RH factor could effect my husband's health. He was born in 1959. I don't have a clue if he had any sort of blood transfusions or anything, but has always seemed to be sore, or in pain, and also has stones, but has never had treatment for them. It would be so neat to be able to compare notes, as I have been married to him for 38 years, and one of my daughter's babies ended up under lights and almost had a transfusion, but nobody told my daughter she was RH- Negative, and her next baby has had a lot of troubles swallowing and keeping food down...she is currently pregnant with her 3rd. I am worried it could be something due to RH Negative? My husband always thought he was O positive, but I know his mother was RH Negative. I wonder how it is passed on from generation to generation, if it skips....trying to learn. Also, I would love to know if others with RH negative blood have no inner voice, in other words, can't hear their thoughts? My husband has no inner voice. He loves to read, but I can't even comprehend how he can do it without hearing what he is reading in his head.
crystal10141973 nicole_60576
Posted
I was also born in 1973. I just found this today and received only three pages of my birth records. they diagnosed me with this and I have the same exact parental situation and blood type and a great deal of the health problems you do plus I have Addison's disease and everyone of my organs are pretty much toast and are just getting a little worse recently with neurological diseases among lots of other things.
becky80648 vari99922
Posted
I am an o+ child of an rh- mother with an o+ father. I am the second born. My mother did not receive the shot nor did i have a transfusion. My sister (firstborn) almost died at birth. She was a blue baby. I however was deemed ok at the time. but I have had health problems off and on all my life . All unexplained. i used to get hives for no unexplainable reason. I had IBS and still do. I had migraines starting in my teens. Muscle pains (growing pains.) Depression, etc... Many other things...Now at age 69 have been diagnosed with SLE. My rheumatologist says Im very late in life getting diagnosed. My mother was rh negative and she was diagnosed with RA at age 60, then parkinsons disease a year later. She died at age 75 after suffering several years. Occasionally my dr would run an RA test on me due go joint pain and hip pain and swelling. It always was negative. Finally my dr ran a complete autoimmune panel on me and I had a high ANA and tested positive for lupus (speckled pattern.) Finally an answer all these years for my health issues. I began to wonder if all this could have something to do with RH incompability. My sister had a heart murmur when she was born. When she was in her 20's she was diagnosed with mitral valve prolapse. Later in life she ended up having open heart surgery to repair her valve. I started doing research on this and during my research i came across this forum. After reading your story and others I think there is a link. More research needs to be done on this.
bozenka01709 peggy40295
Posted
Good Morning Peggy40295,
i am very interested in your post and research. i have RH disease ... i am the 5th of 6 children . Two of my elder siblings past away. my brother John at 10 months of heart disease, my sister Marianne who was born Downs no doubt from RH incompatiblity , also passed away of heart disease.
I have numerous health issues:
as a child i had trouble concentrating, focusing, major depression and anxiety ( i used to cut myself as a teenager and had a severe eating disorder for many years) i was diagnosed w arthritis in my early 30s . All in my spine but have severe pain in my legs and feet daily, severe restless leg syndrome, i DO NOT SLEEP and i have not dreamt since i was a child. i have no short term memory and chronic fatigue, hashimoto, celiac and IBS .. My intestines do not work. i can go 7 to 10 days without a BM . then diarrhia for 2 days. my adrenal and thyroid glands stopped working about 3 years ago. i have hypertension but odd BP typical reading 139/129 ? My mom was RH - my dad positive ... in addition .. my dad has Factor V Leiden which i also have. presently i have 8 herniated disc, 6 screws, 2 rods one cage holding my spine together.
my BIGGEST concern is that my three biological children are very ill as well. my son has SEVERE ADHD, depression, anxiety, signs of bi- polar disorder, alcohol and addiction issues. He is brilliant and attended Yale at 16 years old however cannot manage everyday life skills.. ex. his own check book, cc card, jobs are issues, motivation ( he is not lazy) ... there is more. my eldest daughter already has issues w her thyroid at age 35 , concentration, focus has always been an issue for her and depression as well. my youngest is the most ill. diagnosed at 20 with Lupus SLE and Lupus Nephritis, she has stage three kidney disease, 2 forms of arthritis and depression, anxiety and major panic attacks.
DOES MY RH DISEASE GET PASSED DOWN TO MY CHILDREN. ? i started doing research when my youngest daughter was diagnosed and all of the puzzle pieces of my life of pain and fatigue finally fit together however, i am now much more worried about my childrens future.
have you found any good resources that discuss or explain how and if this disease is passed down through generations.
thank you for your post and you are in my prayers
chimeras_keep kim84686
Posted
I also did not have a blood transfusion after I was born. I was child # 2 of 3. I've suffered with anxiety/agoraphobia, depression, memory problems, and partial seizures since childhood. In my early 30s I developed several neuralgias amongst other symptoms, later to find out that I had autonomic neuropathy/dysautonomia and small fiber neuropathy. It seems like it's always something! It's so validating to find people who are going through similar problems. I hope you all are doing ok, and God bless all!
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