Adult suvivors of Rhesus Haemolytic Disease

Dear All

So my food allergy blood tests came back as all highly positive with IGE of 292. What it did do was completely change my doctor's perception of me into OMG.. you are alive.. what are you going to do?.. you are amazing... and while it was kind of nice not being sort of anonymous before that, .. it is wonderful to know that finally my doctor after 25 years realises I have a condition in my blood and not in my mind. All the young nephews and nieces who have recently gone through Med school say there was no mention of this at all

So I wrote a very generic email that I was in contact with other ASRHD's ( no specifics) and we all have issues, struggle to find any commonalities and no one has taken any interest in us. I sent this to the global liver centre and this below is what I got back.

My question is if I pursue this would any of you be interested in sharing your case studies if someone did get interested. I see this group as an anonymous private safe place, so it is totally up to each one of you. So let me know whether you think I should go ahead, if I can tell a researcher of our existence without saying where we are or who we are, and whether or not each one of you, if any would be happy to be involved . My primary concern is to protect each and every one of our anonymity and confidentiality .

Discussing it with a Dr today she suggested to use the word 'neglected' rather that rare and I liked that as this condition has not been rare to any of us.

Please let me know what you think and if any of you also want to do something and how we can do it without breaking anyones confidence. I am happy to go ahead as just me and if one or two of you want to support me.. and post here how we get along

Sue

Sue Canney Davison PhD

*Sue,

Thank you for reaching out to us at Global Liver Institute. You are taking the experience you and others who have suffered from RHD and trying to do something constructive and for other people. Thank you for that as well.

*The groups most likely to be able to help you are the American Association for the Study of Liver Disease (AASLD) in the U.S. and the European Association for the Study of Liver (EASL) in Europe. These are the largest organizations of hepatologists, both physicians and researchers, and have members around the world. I am copying one of AASLD's officers, Greg Bologne.

*Another contact might be the National Institutes of Health, both the Office of Rare Diseases Research and National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which also focuses on the liver. Finally, have you reached out and spoken with people at the National Organization for Rare Disorders; they have helped many people with rare diseases to organize and engage with researchers. All of these organizations and their contact information can be found in a quick search on the Internet.

*

*We hope one or more of these resources prove productive for you.

Richard Gelula, COO

rgelula@globalliver.org | (202) 725-5581

www.globalliver.org

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*

ive read through all the posts and realise i have many similarities. I had a full blood transfusion when born with rh disease in 1970.

My relationship with my mum was also very distant, I was always trying to make her love me. She was always very distant and has never told me she loves me, she has dementia now. She is very affectionate with other people now and I find this very hard. This has impacted my adult life and I still find it hard to display affection to my own family.

I too have often felt everyones lives would have been better if I hadnt been born - this wasnt helped as I heard my aunt telling her friend I was a mistake and my parents didnt want another child (I was 10 then). I have never liked big groups if people or parties and I can only cope with a small number of friends in my life. I prefer my own company, I'm always waiting for people to let me down and not be there when I need them. The fewer people I have in my life the fewer people there are to disappoint me.

Health wise, I was always very sickly as a child having my tonsils and adenoids out at age 4. One of my feet turns in, I have pains in my hand and feet all the time. I'm allergic to penicillin. My hearing isnt great, If I concentrate on one think I cant hear anything else around me.

Both my children suffered from febrile convulsions. my daughter has just been diagnosed vit b deficient with low iron and folate she also has dyslexia (I think I may have it too). Im always tired and feel like im trudging through treacle most days.

Wow. I stumbled across this as I was searching for answers in my own health battle.

My mother was RH - and I was her first child and born 1970. Never had any transfusions at birth.

I do not know if she had any miscarriages etc before me.

I have struggled my whole life with immune disorders - being diagnosed over and over with different things that ended up not being able to be proved by the specialists.

From rheumatoid arthritis, fibromyalgia, constant swelling (oedema) of my entire body usually extremities, feet, legs etc, hernia after hernia to the point that I now appear 6 months pregnant at all times, turned right eye (which I had surgery on at 6 years old) to rare eye conditions, poor vision, congenital cataracts, neurological disorders unexplained - unable to move my legs on command to having the signals crossed and moving the opposite leg to the one that I believe I am moving resulting in falls, gall bladder so bad it took 7 hours to remove it was so enlarged and solidified, to enlarged kidneys, blood clots in lungs, asthma, hay fever, eczema, hair loss periodically, diabetes, GERD, and more. I suffer with intermittent memory loss, involuntary muscle movement and loss of movement, constant oedema, and I honestly can't say I have anxiety or depression yet I don't have a great scale to measure that on considering I grew up in an abusive home (mother alcoholic and abusive) then into domestic violence relationships etc so my flight and fight system is pretty much always switched into overdrive so gauging anxiety or depression for me is not something I know how to do. Painful joints and limited flexibility are huge problems for me as well. I have also suffered extreme weight gain in my life. Starting from birth onwards. I was diagnosed at 2 years old as being morbidly obese. I have struggled with my weight all my life, even after having surgery(s).

So interesting to read that there are many similarities between what others have experienced.

Thanks to everyone who has posted. I will continue to search for more information.

I was originally marking posts that referred to specific symptoms and intended to address those people, but I marked so many I decided on page 3 to address everyone. I apologize for the length but I think the information is vital to many of you.

I have A- blood. My mother is A+ and my Grandma is A-. I am 46 years old. I've worked in various health care fields, and studied natural remedies since early teens. I've worked as a massage therapist, studied psychology in college, and worked as an EMT for 8 years. I've yet to see anything like Mom's disorder.

For almost 21 years I have been researching my Mother's symptoms, her disorder she was diagnosed with after 16 years of misdiagnosis, and how to help her. A theory I have about what causes her disorder brought me to this site. I have already learned more than I expected and I'm not finished reading responses yet.

My mother was born in Virginia (USA) in 1952 before the rhogam shot was introduced. My grandmother miscarried her first baby, and my mother did not have a blood transfusion at birth for some reason. The doctor said they were happy and relieved to deliver her alive. She did not have jaundice, but apparently stayed sick her entire childhood. She was "allergic to the cold virus", according to doctors, as well as penicillin, and has many environmental allergies. The allergist she recently saw told her she was "allergic to everything" (though not literally).

She had Scarlett Fever and repeatedly got strep throat as a child. Her teeth are very soft and she has been told her tooth enamel was thin. I never considered that a symptom until I read many of your comments.

She has always had leg pain, so severe that even as an older child her father had to carry her at times because she couldn't walk. Most of the time she could run, dance, and play like any other child. She describes the pain now as cramping/restless syndrome type pain. She often had a stiff neck in childhood, and has always had hip, knee, shoulder, and jaw pain. Her jaws and ankles have always popped loudly. She was "pidgeon toed" from short ligaments in her legs. She is slightly dyslexic and, though never diagnosed, has always had an attention deficit. She has always had migraines and muscles cramps and pain. Her menstrual cramps were abnormally painful, at times causing her to pass out.

In her 20s she had to have major spinal surgery due to stenosis (the inside of her spine growing shut) and her spinal cord being slightly too long. It was being pinched as the stenosis worsened. There seems to be an abnormally high amount of people her age with stenosis in this area. I believe that may have been caused by DDT, a pesticide widely used on crops in the 50's, and caused birth defects. I included it anyway because I've already seen other symptoms I did not expect to see in this thread. Surgery helped related lower nerve issues and back pain that developed in her early 20's, but the childhood symptoms and spasms remained.

She slept alot when I was young, but by the time she was 36 she was tired most of the time, and spasms would pull her shoulders up to her ears and her neck sideways, or to her chest, became more frequent. By the time she was 39, she was lucky to stay awake at home or driving, and exercise caused severe spasms. At 41 she had to stop driving due to dissociative episodes from severe pain. Her jaws locked in spasm and she had TMJ surgery. She was forced to go on disability by 43.

Doctors sent her to specialists and physical therapists(who made it worse because her disorder is rare and requires special treatment.) She was sent to Psychiatrists who sent her to Neurologists, and the Neurologists sent her back to Psychiatrists. This repeated for years. Antispasmotics stopped working, and never worked well anyway. Doctors refused to look at a whole illness. They treated individual symptoms. She was told to lose weight and Rest. One doctor decided the spasms were from dystonia. Dystonia is neurological term used loosely for a movement disorder involving muscle spasms, usually (in theory) without pain. There are many causes. I asked what was causing the dystonia many times, which was always dodged with medical jargon that made it sound like the doctors knew what they were talking about. Basically, they were telling us the medical term for her spasms and trying to treat them like normal muscle spasms without success. She had many, many wrong diagnoses. I had already started research myself after her spasms became so severe they would contort her body in bizarre and painful ways. (Like torsion dystonia).

When she was in her late 40's, she happened to luck out and see a neurologist that went to a seminar where Stiff Persons Syndrome (SPS) was mentioned(AKA Stiff Man's Syndrome). I saw the disorder in a very old neurological textbook under it's original name, Moersch-Woltman syndrome, but only

in relation to torsion dystonia.

There is a very specific way the test has to be run for accuracy. After ever test imaginable coming up negative over the years, she was positive for SPS. One in a million people have been diagnosed with it. The cause is unknown but it is an auto immune disorder where the body produces anti GAD antibodies. The neurologist Did diagnose her right, but unfortunately he wasn't a genius... he just guessed. The treatment at the time was unknown, so I went to a patient/family forum and shared information ​with him on what was and was not working. He welcomed the input after he learned my background, and I eventually saw a pattern in meds that was right. It is not a cure though. It slows the course.

In autoimmune disorders, the body actually produces antibodies against itself. Depending antibody depends on the disorder. It is like getting an organ from a donor with the same blood type, but having your body reject it anyway. Only, your body is defending itself Against itself mistakenly.

I posted a list of questions on the stiff persons forum I did most of my early research on years ago. One thing that I asked that had crossed my mind because I have A- blood and had to have Rhogam shots (YOWWWW) was, did the person with SPS have Rh positive blood and their mother Rh negative. Many were uncertain of the mother but had Rh positive themselves. Many more responded yes. Some did not answer. I do not remember the numbers, but for as few people that have been diagnosed with the disorder, the percent that answered "yes" was very high. There were only a few other common factors within the group, which consisted of people from multiple countries and backgrounds.

My mother is under going IVIG therapy with some relief at this point. The blood is filtered one week a month to remove the antibodies. There is more information on this and other similar rare disorders on the National Organization for Rare Disorders' (NORD) website. They have been a good resource for many things, and have good legit links. They also have links to clinical trials, which is where some of you may find help you can't afford, or when the doctors are stumped.

If anyone else has been diagnosed with SPS or has painful spasms that pull any part of your body in awkward positions (like muscle cramps, but they don't massage out easily or ease with heat) please contact me. There are a few types of SPS, but some are very serious and many neurologists haven't even read about SPS yet. Most who have will never treat a patient with it. Mom has seen two movement specialists that retested her thinking it couldn't be Stiff Person's, and one of them had treated another patient with it, just in a different stage. It is misdiagnosed often as regular dystonia or fibromyalgia, but the wrong treatment can cause delay in slowing the progression, or be life threatening.

I believe the Rh negative factor is involved, but without enough people with symptoms or a diagnosis already, telling the same place at the same time that they have positive Rh and their mother has negative Rh, it could take decades before they figure it out. Most people don't even know what their mother's blood type is, much less the RH factor, and how many times have you seen a question about it when you filled out new patient forms. I was told I was A+ until I was pregnant with my O+ son. That's when I learned I was A-. And all of those points are why I am posting this novel. They may be able to find better treatment or possibly a cure if it is Rh related and those of you with symptoms come together. I already know what places are up to date and treating people. I still haven't seen One study related to Rh factor. To find a cure, they have to find the cause.

I'll try to check my email frequently, since I usually don't. I'm not sure if I can leave messenger information for private messages or not. The link is for NORD. Information about many conditions I saw in posts before mine can be found on their website.

https://rarediseases.org/rare-diseases/stiff-person-syndrome/#synonyms

I truly apologize for the length of my post!!