Adult suvivors of Rhesus Haemolytic Disease

Hello Everybody!

I hope that my email will reach all of you!

I am not sure how this site works, please advice!

BECAUSE WHAT I HAVE DISCOVERED SHOULD BE SHARED WITH EVERYONE ON THIS PAGE !!!!!

My discovery could save most of us!!!!!

The lymphatic system is not working proper, therefore, is affecting everything else!

I made the discovery by accident, ofter I went twice to a Chinese Dr.

First he drained the lymphatic system, through a antic method of suckers(in Spanish are called ventosas)

I have felt like sleeping and I barely have gotten to my home- I have slept for 18 hours, uninterrupted.

Another time He performed just a massage. I have felt very ill! I think, because of dispersing the toxins into the body.

I have tried at home the same treatment with the massage, made by electric massage machine- BUT when I was in the period time. All toxins came out, and I felt so much better. I try to make a point in the monthly massage. My health has improved.

I am looking forward for your help with the propagation of the message.

Thank you !

HI Everyone

I am a 64 year old total transfusion survivor originally from Newcastle, I realise how fortuitous that was. I am so interested in what you are saying Rhonda about Ig deficient. I like everyone else have had a life time of allergic reactions and severe urticaria to so many things, weak enamel, one pupil that does not work well. I have avoided allopathic medicine as much as I can my whole life due to almost dying of penecillin and ledemycin aged 6. However now with dying infected teeth , my life long fear of antibiotics is kinda coming to a head. I live in Africa and the London Allergy centre seems to be suggesting about 3 months in London for tens of thousands of pounds to test the possible severity of antibiotic allergies, as I would like to avoid dying of antibiotic poisoning after all this time. . Anyone got any ideas? By the way are there lots of us in our 60's and 70's , 80's and more navigating our informed as possible ( which is practically zero in this case) way through the maze of health challenges? I would be so encouraged to know I have a strong statistical probability of another healthy 20 years ahead. And Mirela Thanks for the inspiration as my first response when the dentist said I have a serious problem with one tooth has been to head to the total detox centre to try and strengthen my immune system. .. and Like all things I find I have to go really slow and much less extreme than normal folks. Eating does seem to be becoming a more of a challenge and interestingly they said after some measurement of BMI and other things on probably a not overly scientific machine that I have far too little fat in my body despite having a reasonable spare tyre. All my bones clunk an awful lot, especially during pilates. it is getting worse .. but I have managed to stop fracturing bones at an alarming rate. by being much more careful. My osteopath said I have to lose still more weight @ 57 kg at 161 cms if I want to stay upright. Life long low muscle tone and floppy ligaments .. the envy of others in yoga classes, but after a few classes I would just be back with the osteopath with everything in the wrong place. So I do Qi gung which is more compact and strengthening and I have focused on wholistic energy medicine, acupuncture homeopathy, herbs and lots of Grace. I feel so grateful for every day as subliminally I never expected to have two gorgeous sons and get passed 60.. and here I am.. now that tooth.. already pulled the two behind and no one does major tooth work or indents without antibiotics. Any suggestions? Rhonda any way to test for compromised IgE?

Hi Rex

Sorry to hear that life is a struggle for you. I suspect that your difficulties could relate back to your RH disease but it is very hard to prove anything isn't it! I hope you are coping.

Rex,

I'm very interested in what you describe. I'm sorry for what you are experiencing. I don't know what you read about me, but I am 51 and had 6 blood exchanges (emptying out all my blood while introducing new blood) soon after birth. I was taken a month early or Told I would have died and then wasn't touched for about a month. I have depression and severe anxiety as well. I have recently ended up on disability because of all the multiple medical problems I began to have. I cannot find any medical literature on RH and long term problems. My father finally told me - after I began experiencing so many obscure medical situations that made no sense - that my pediatrician said when i was discharged from the hospital as an infant - I would most likely begin to develop medical problems in middle age. I look forward to hearing more from you. Take care, jenny

Hi Jenny,

I'd be more than happy to go into more detail about my experience with RH. As I said in my earlier post, I was a child that in all honesty probably shouldn't have been conceived, at least that is what my mother's doctor warned her before she attempted another pregnancy after my ywo sisters were born. This was 1957 before medical technology knew how to properly deal with RH inutero. The only thing I know for sure is that I had two full blood transfusions within the first 48 hours of life. In kindergarten It was discovered that I had moderate hearing loss in both ears which is, from what I understand, a common ailment with RH babies. When I had my tonsils removed at age 5 the doctor also removed my adenoids which helped with the hearing loss but did not eliminate it completely. I had an unusual number of ear infections as a child and even into my 30's. Two of them so severe that my ear drum ruptured. as an adolescent, it was discovered that I had a bulging disc in my neck that through the years caused anything from a slightly sore, stifff neck to near paralysis of my left arm.That was followed by a severely bulging disc that left me temporarily unable to walk. As the years went by I had more and more health issues. ADHD that went undiagnosed until I was in my early 40's which looking back on was the cause of learning disabilities despite the fact that I had a higher than average IQ. I will try to list all of my medical issues in chronological order. A severe staff infection when I was about 11 years old that left boils on my backside and left me bed-ridden for an entire summer. Mild depression that worsened as I grew older and a generalized anxiety disorder(GAD)that developed soon after the depression and joint problems with my right elbow and both shoulders. Starting in my late 20's I started having issues that are normally associated with people that were 30-40 years older than I was. Hemorroids, hernias, diverticulitis with occassional flair ups of diverticulosis, hip pain which is probably arthritis. Tinittis, or constant ringing in both ears, Angioplasty with the placement of 5 stents when I was 47.  Maybe the worst of all is bi-lateral neuropathy of the pudendal nerve(you may need to do some research on this one,It's a very cruel disorder.) High blood pressure, type 2 diabetes, COPD, a recently diagnosed melanoma on my right shoulder that was successfully removed, GERD that has left me with a pre-cancerous condition in my esphagus called Barretts Syndrome and I'm probably forgetting a few more. I have been curious for a number of years now if any or all of these conditions are a direct cause of my RH. Finding this forum and seeing others who have multiple health issues has raised my curiosity even further. I'm also wondering if my mother has told me everything about my birth and any complcations there might have been in addition to needing the blood transfusions. I'll have to ask her one of these days.

Wow Rex - I have to tell you I am so sad to hear about all you've been thru. I was only the second child of my mom's with RH - my brother was born 15 months earlier and started the whole thing... Which I guess prompted the amino for me which mother said was one of the first ever done and they took me by Caesarian the same day.

My medical problems include having a crappy bowel pun intended - diverticulosis diagnosed at 20 and being told I have the bowel of a 50 year old. I have ended up with multiple episodes of diverticulitis in late 30s and 40s with perforation colostomy reversal etc. I have been diagnosed with soft bones and with osteoporosis at about 40. I have arthritis thru out my body. I've broken my femur both hips my foot my finger all from really nothing. I have hypoglycemia where I can faint if I do too much without eating but I have chronic diarrhea which isn't IBS, which causes me unable to eat. Just last week I had what the drs think was a TIA - (couldn't talk or walk but was lucid) but my heart tests all r fine but my blood pressure can sky rocket then be back to good within 12-24 hrs with no medicine. That night I had super high BP tachycardia and palpitations. They still sent me home in 24 hours.

Anyway - yes very weird. I'd really like to keep comparing notes and thoughts about this. Btw my mom got pregnant after having me and was told the baby had little chance to survive 50/50 best case - he sent her for an illegal abortion. So sad.

Hi Jenny and Rex, I have been watching your discussion with interest on behalf of my 34 year old daughter. As I mentioned earlier, she was my second baby and I am a Rhesus negative mum whose anti D injection was not properly administered and she was not properly attended to (no transfusions etc) even though the medics knew I had developed rhesus antibodies and therefore the second child would be affected.

She has serious gut issues/ abdominal pain and is always bloated with what has been generally diagnosed as IBS. She shows signs of stress and anxiety and has developed OCD issues for which she takes meds. Her ankle often hurts and she is always tired. Unfortunately, unlike her high flying brother, she is not confident or academic and will find it hard to cope when her Dad and I aren't around anymore. Reading your symptoms does not fill me with hope for her!

There seem to be very few of her generation affected and no one seems to accept the cause of all these difficulties. 

Did you find it hard to relate to your own age group, I wonder? Do you sometimes, although trying to be kind, say inappropriate things? And have you found it hard to stick at and organise yourself in tasks? I am wondering if these are typical RH disease symptoms?

Thanks and I am praying for you.

Hi Christine,

I'm sorry to hear about your daughter. I don't know if there are typical RH symptoms bc I have not found anyone except thru this forum. I would really like to develop a list to compare and contrast.

What you describe about your daughter reminds me of me... It could be many other things until we recognize most are shared by RH babies. I have a pretty high IQ which I share with my father and his family. I have depression and anxiety which I sadly share with my mom's family. I do say 'the wrong thing' like I have no filter sometimes. I have as you have read multiple weird medical problems. The way I see myself right now is a 51 year old woman who was vibrant and active etc then at about 40 my medical anomalies I'd had actually began effecting my life. Diverticulosis became diverticulitis. Chronic pain and inflammation became fybromyalgia and body wide osteoarthritis with a few broken bones thrown in for osteoporosis. Now my heart palpitations turned into a TIA and I'm back seeing a cardiologist. Like my internal body is at least 25 years older than my physical chronological body. I have old lady diseases.

Jen

Hi Christine,

So sorry to hear that your daughter is suffering. I hope that somehow, someday she'll find some relief. As for the questions you posed in the last paragraph of your post, I have to say that I can answer yes to all of them. Prior to relocating from my hometown of almost 45 years I had maybe 2 or 3 people that could call good friends. After moving, I had very little interest in meeting new people so I basically became a homebody. As time went by I did make new friends and aquaintances but everyone I socialize with now are a good 20-30 years younger than I. I'm also very impulsive when I converse with others which sometimes leads to me saying inapproriate things. And although never a really organized person, it seems that my ability to focus and stay on task is getting worse. There could be likely reasons for all of these other than being affected by RH as I do have A.D.D.

I knew I was forgetting a few things in regards to health issues. I started losing all of my tooth enamel about 15 years ago resulting in in dozens of cavities and fillings. Just recently had to have all of my teeth crowned in an effort to save them. Then just last year I came very close to dying from septic shock that was brought on by complications with gall stones and the almost complete deterioration of my gall bladder. So, yeah...theres that too. 

Hi Rex,

Wow. You have been through so much. Wishing good health for all of us. I just responded to Jenny's post about dental problems.  She has suggested we compile data of our symptoms. I think it will be really revealing as we just have too much, unfortunately, in common. Hope you are doing well today. Take care

You know, I just had an interesting thought that I'd like to share with our forum members. I tried Googling "The effects of low red blood cell count on fetal development." and although I didn't really find much, what I did find out was pretty interesting and just might explain some things. Like I said, not much on what I was looking for but in the search process I ran across some information about Mother's anemia during pregnancy. It would appear that the medical profession has a pretty good handle on the recognition and treatment of this disorder because of the fact that there are outward signs of it and the ability of the mother to comunicate some of the more subtle symptoms that might not be so obvious, even to the trained eye. But what about the fetus? They are obviously unable to vocalize to doctor what they are experiencing. Although not technically termed fetal anemia, the effects of RH are quite similar to the unborn baby. Lack of sufficient red blood cells and subsequently the oxygen they carry to such. It has been well established that the lack of oxygen rich blood can cause brain damage to the unborn child. What I haven't been able to establish if that same condition can affect other aspects of development as well. I am specifically referring to the development of things like all of the other major human organs, connective tissues such as ligaments and tendons and other things I might not be thinking of. Would it not make some sense that the lack of or more specifically the partial depletion of oxygen(and possibly iron that is also a function of red blood cells could cause a multitude of issues with fetal development? Maybe this is why so many of us have so mcuh in the way of similar health issues. Just a thought.

Hi Rex, this all makes a lot of sense. Thank you for sharing.🙂

Hello Rex, I am a new follower of this as of today.  My mother was Anemic while pregnant with me.  I am the second born of the three to an Rh neg mom.  I was slow, with a high IQ.  I was sick all the time and no one ever said much to me, as being a genetic misfit was an embarasement in the early 60's.  My sis 2years younger was completely retarded and had numerous seizures a day.  The Dr. made her a ward of the state as my mom was not equiped to handle all of her medical needs.  my mom was devestated!  my older sister became incresingly introverted and my mom withheld all info of this to me.  she felt if I  knew I was sick i would give up...well, I too was active and had many reoccuring infections, and migraines.  when i neared 50 I fell and broke 3 ribs and they never healled.  since then I am found to have anemia, but not iron.  vit. B, D and C...also low immune system, cronic fatique, 

SAD, sleep Apnea, Cronic sinus infections, arthritis, asthma, high BP, IBS w contipation and severe allergies.  I also have in our family...EDS and  get this...an un explained enlarged Liver!  well now I know why!  I know it progresses.  I can barely tolerate wheat now.  and milk is a constant problem.  I feel for you Rex!  I hope you find some thing of use here.  I regularly take extra vit B andC,  plus perscription Vit D 25000.

good luck!  i am amazed at your research into this !  continue on... did you see now on Ancient Aliens show on nat geo, says people with the  Rh neg trait are most likely from another planet!!!!!  others suggest we are from an ancient peoples who are angles desinded onto earth!  hahahahahaha....but what we are is....DETERMINED!  to push for more research! and education of DR's!!!

I am very much like your daughter. 

I’m 38 but had blood transfusions when born and a ton of health problems. 

Interested though you mention the organizing, saying inappropriate things, feeling out of place with people etc. 

I was recently diagnosed with adult ADHD  - a lot of these traits are similar to  female adults who went undiagnosed with adhd. 

I am glad I am no alone in struggling with all of this...

Hello Everybody!

I hope that my email will reach all of you!

I am not sure how this site works, please advice!

BECAUSE WHAT I HAVE DISCOVERED SHOULD BE SHARED WITH EVERYONE ON THIS PAGE !!!!!

My discovery could save most of us!!!!!

The lymphatic system is not working proper, therefore, is affecting everything else!

I made the discovery by accident, ofter I went twice to a Chinese Dr.

First he drained the lymphatic system, through a antic method of suckers(in Spanish are called ventosas)

I have felt like sleeping and I barely have gotten to my home- I have slept for 18 hours, uninterrupted.

Another time He performed just a massage. I have felt very ill! I think, because of dispersing the toxins into the body.

I have tried at home the same treatment with the massage, made by electric massage machine- BUT when I was in the period time. All toxins came out, and I felt so much better. I try to make a point in the monthly massage. My health has improved.

I am looking forward for your help with the propagation of the message.

Thank you !

Hello Everybody!

I hope that my email will reach all of you!

I am not sure how this site works, please advice!

BECAUSE WHAT I HAVE DISCOVERED SHOULD BE SHARED WITH EVERYONE ON THIS PAGE !!!!!

My discovery could save most of us!!!!!

The lymphatic system is not working proper, therefore, is affecting everything else!

I made the discovery by accident, ofter I went twice to a Chinese Dr.

First he drained the lymphatic system, through a antic method of suckers(in Spanish are called ventosas)

I have felt like sleeping and I barely have gotten to my home- I have slept for 18 hours, uninterrupted.

Another time He performed just a massage. I have felt very ill! I think, because of dispersing the toxins into the body.

I have tried at home the same treatment with the massage, made by electric massage machine- BUT when I was in the period time. All toxins came out, and I felt so much better. I try to make a point in the monthly massage. My health has improved.

I am looking forward for your help with the propagation of the message.

Thank you !

HI Cynn. In case you come on again.. how many times have you been around the sun?

I feel like we need a celebratory ' we did it in spite of' club...and chuckle at just what s** t goes down. Like you, navigating things like food and eating feels like it is getting tougher ......at little bit faster than I might hope for ...

Hello Rex,

What you wrote was very interesting to me. I had just been speaking to the man I was engaged to marry 44 years ago. We were catching up on family stories etc and I found that he was unaware of having been an Rh baby in July of 1956 who was subject to a series of transfusions within the first week of life that completely replaced the entirety of the blood in his system. As we were talking about how we both have survived over these many years and he told me about the many physical problems he has I asked him if he thought any of them may be a result of his having been an Rh baby that required complete transfusion of blood supply? He asked me what the h--- I was talking about!

Evidently although his mother had warned me about this problem when he and I had gotten engaged she had never spoken to him about it. She said that we absolutely must have the blood test done so that I would not have to deal with the terror she felt at nearly losing her second child. And she chose to have a surgical means of birth control done within a year of his birth to take no further chances of natal death.

When I knew him he had been a long time friend of my cousin in our home town. I had known him most of our lives and only knew him as involved in most everything sporting and outdoorsy. He lettered in 3 sports, was a competitive water skier and a scuba instructor. He did have issues in studying which is how I came to know him as my cousin begged me to tutor him to keep his grades eligible for sports. When we were that age in small town New England there was little I can remember of ADHD until my own children were in school. I do remember that he had trouble staying on task for the duration of what would have been the length of a class. I thought, as young girls will, that he was just flirting with me.

What I found was that he has fairly fragile type 2 diabetes, High Blood Pressure, had 85% of his lungs full of blood postules that they removed and then since has had to have 5 stents. Oh and a weird one is that he said his tongue is convex(?) although for the several years we were together I never noticed anything like that. We separated after a tragic incident in which we lost a baby (before his mother had given me the Rh info) and he felt somehow responsible for that happening and when I was away at University told my cousin he couldn't talk to me anymore but gave no reason to my cousin nor to me until now. If only we'd have had the information sooner or I or his mother had felt like it was something he'd needed to know...but I digress

He is currently healthier than most men half his age and is an engineer as well as a stone Mason and had no idea why his well being has suffered like this.

I was just astonished that his parents would not have made this known to him as well. The tragedy is that 40+ years of heartbreak could have been avoided had I persisted or had his parents told him as well as just me. He said they always told him he was an idiot to let me go. I kept in touch with them until they passed away as family friends.

I just hope that the many of us whose lives have been affected directly and indirectly can convince medical care providers that this is a line of study that is needed.

To any of you reading this and searching, please tell your loved ones of this disease and the details of its effects on you. They can't all be coincidental..

I dont have all the same issues you have but i do have many of them. So I can identify.