Is anyone Rhesus Negative?

[Elle-26]

Im finding more and more people that have autoimmune diseases have rhesus negative blood groups and wondered if there was a connection?

[saranne]

Don't know about connections but...I am Rhesus negative,so was my mum who also had autoimmune problems, an interesting theme to follow!

[Hidden]

like Saranne, I know nothing about it but I am negative and my daughter is too. She suffered with ME when she was 16. we are watching this space!!

[Olibop]

I am Rherus negative and so was my dad he had lots ot health problems !!! Xxx

[lizzy60]

I've wondered if there is a connection as my mum was negative and had sle and so do I although not negative

[Barnclown]

good question.

am especially interested in lizzy60's reply

my parents had rhesus incompatibility. my mother had 10 years of miscarriages after my older brother's birth, until i was born. during her pregnancy with me, in 1953, in order to "prevent" miscarriage, ma was on daily DES (the scandalous & notorious artificial oestrogen, aka stilboesterol, now banned for pregnant mothers, but still used as a morning after pill and for certain medical treatments). i was born with typical DES daughter reproductive organ birth defects and have had a lifetime of gyn problems due to DES, including being unable to conceive. you probably know that in '71, DES became known as the 'silent thalidomide', because that was when drs discovered des daughters have a high rate of rare vaginal cancer and reproductive organ birth defects, which DES sons also have, etc. consultants have told me they think DES probably cause my lifelong systemic lupus. but my mother became hypo thryroid in menopause. so autoimmune conditions are in my genes.

i don't know my blood group: for some reason, when ever i ask, drs say they can't tell me.....and haha due to my systemic lupus i regularly attend at least 10 different NHS clinics, and have batteries of blood tests all the time due to all the meds i am on etc etc! now i'll try even harder to learn my blood group

thanks elle-26

[sandwiches in reply to Barnclown]

I am also rhesus negative. I also don't know what my blood group is. I have had numerous blood transfusions because of anaemia and the doctors each time i was in hospital had to send to another county to get donated blood as i had a rare blood group..My mum developed autoimmune problems after having a knee replacement she never recovered as she had one problem after another. I have never heard of DES and i would love to get more information about it. Maybe it can give me more information on why i am ill for so long.

[Barnclown in reply to sandwiches]

Hi: ask your mum if she remembers taking DES while pregnant with you...but this drug was prescribed under MANY MANY different brand names....the archive at the DES Action USA website should have a LONG list of these brand names you could check...also, I hope you've spotted the longer reply I gave with more DES info below in this thread

[sandwiches in reply to Barnclown]

my mum passed away in 2005 so i can't ask her, but she did say that when i was born i was very ill with breathing problems but the doctors didn't give a diagnosis as to what was wrong with me. I have seen the longer version of DES so i shall read it. Thanks for your reply.

[Elle-26 in reply to Barnclown]

My mum never had DES, I phoned her to make sure ... but she is rhesus neg and has autoimmune diseases .. x

[joannebond360]

I am rhesus negative! How interesting!

[Barnclown in reply to joannebond360]

hi joanne: how old are you? i ask because some mothers were prescribed DES right up into the '70s. I've often wondered how many lupus patients are also DES daughters & sons. but when i ask on forums, most people seem unaware of DES. I suspect that many mothers didn't even realise this was what they were being prescribed. of course, there were million of exposures in the USA, and many less in the UK. so far there no definitive scientific proof of a firm cause/effect connection between DES & lupus....just suspicions. interesting that, even so, some of my consultants have dared to say they think there probably is a connection

[JJKANE]

What is DES ?

[Barnclown in reply to JJKANE]

Hi: have given some info in my reply below (feeling I mustn't hijack this good RH question though!)

[joannebond360]

I am 37. Not heard of DES, what is that?

[Barnclown in reply to joannebond360]

Hi. As i understand it, DES exposure was still going on in your age group, but on a much lower scale. Anyway, I've given some info in my reply below

[Trulyfedup]

Hi, I am rhesus negative and my parents blood was invlcompatabke. I have a twin sister who has a very serious blood disease homocysterniria. It is due to the parents blood crossing. I Have wondered this myself as the card I used to carry for rhesus neg...stated I had Atypical antibodies. A very interesting point. Maryx

[Barnclown]

Will try to give a brief reply re DES, but this is a big subject, and i'm famous for going on & on about it!

The story of DES is similar to the thalidomide story, in that DES & thalidomide cause significant birth defects in utero around the world at just about the same period of time in the 20th century.

The terrible legacy of these 2 drugs has an upside: drug testing etc began to improve as a result of the scandals due to the damage they caused. The biggest diff is that DES birth defects are internal, so hidden from the eye. Thalidomide caught the attention of the media & the public, partly due to the visual impact of the dreadful defects it caused. DES did also cause an international scandal, but drew less ongoing attention. I guess i have a fairly good grasp of the main facts about DES. But Wikipedia covers DES vvvvv well, and DES Action USA has excellent archives and a very fine forum on yahoo, so if you're interested, do check DES out further. the CDC (USA Centers for Disease Control) website also has excellent DES information.

DES was one of the first articifial oestrogens synthesised. A famous Brit scientist was knighted for creating it in the 1930s, and over the years came to be very concerned about how it was prescribed. Poor man...The medical/pharmaceutical establishment decided DES prevented miscarriages, got it approved for that purpose prescribed it to pregnant mothers widely and for long periods of pregnancy at various dosage levels, hence the variety in the severity of birth defects. In the USA there were many manufacturers...millions of women & foetuses were exposed, so the birth defects and cancer rates are highest in the USA. But women were exposed to DES around the world

The first alarming research confirming the emergence of DES birth defects & cancers was published in the USA equivalent of the Lancet in, I think, '71. This was the breakthrough moment, and the turning point for halting exposure to DES. BUT the drug continued to be prescribed as drs wised up to the implications of research....AND DES got into the food chain (used in raising cattle etc). Research has continued into the effects of DES....it's thought to be a cause of rheumatoid arthritis...as we des daughters developed menopause a predisposition to more GYN cancers has begun to emerge. There are suspicions DES effects may be seen in the 3rd generation. Research continues around the world. But public awareness is relatively low.

It is what it is. the USA official CDC (Centres for Disease Control) and its equivalent in Australia provide excellent info on DES and how to appropriately monitor the effects of DES (I have annual monitoring - the NHS does have a protocol re DES daughters & sons)

You'll be thinking: enough already. I hope this helps introduce you to a big subject close to my heart

[Maya23]

I'm rhesus negative too. Never heard of DES but I don't think my mother was given it. I was born in 1972 in UK.

[christin777 in reply to Maya23]

This is my second post.

I'm o- and have had SLE since very young and I am a DES daughter.

[jimsalisbury12345]

am negative lso

[joannebond360]

Wow! Thanks for that info, Will find out if my mum had that.

[Hidden]

I am also A neg blood group, interesting....

[zebedee01]

I am also rhesus negative!

So is my mum and she has alsorts of probs, i'm sure she has lupus aswell but she never gets a diagnosis! They have thought fibromyalgia.

[Lynn27]

I'm also a/b rhesus negative my mother was too. I had I shot when my daughter was born because my husband is positive. Iv so many auto immune probs. Iv often wondered if is because of rhesus neg blood.

[Elle-26 in reply to Lynn27]

Hi Lynn27, I also had the shot they give you as Im Rhesus Neg O but my son is Positive and his health is not 100% .. he has had anemia, swollen lymph glands, he is always fluey, and pale, muscles hurt him (hes only turned 5) ... Ive got Lupus, discoid and other autoimmune problems ... its hit me in one big bash this yr .. must have laid dormant ... my Mum is in Chronic pain ... her kidneys are failing and has a terrible rash, muscle problems etc ... Im glad it wasnt just me thinking about the rhesus neg blood -x-

[MUP123]

Rhesus positive with SLE. Sorry!

[Elle-26 in reply to MUP123]

Interested to find out whether your mother or father was Rhesus Neg? And if so, whether there was any blood mix at birth? My daughter and son are positive, however there was some blood mix at birth with my son ... now he is having health problems Im just interested as to whether there is some connection -x-

[mcjm]

I am also negative...this is all very interesting!

[jayfer]

I am rhesus negative too... mild lupus, fibromyalgia and being tested for sjgrons ( apologies for spelling) this month. Dr said I had RA about 30 yrs ago, recent diagnosis of lupus, so wondering if it was lupus back then too

[Elle-26]

Yes mcjm it is very interesting and also Barnclown for bringing to our attention the DES.

[Purplesox]

Hi! This looks so interesting! Yes, I too am Rhesus Neg! Wonder if anyone has ever done any research into it?

[janjan78]

Blood group for me is B+ (positive) no idea what my parents are but having read the DES daughters I wonder if my mother was given anything or similar as she had stillbirth but not until '76 so doubt she would have been given DES but she sailed through her pregnancy with me "after treatment" makes me wonder what she was given & she won't talk about women's stuff especially near the time of her stillbirth......will maybe ask her when I can pick her mood & see if there's a connection between what she may have been given to what I'm going through now.......maybe not but worth looking into....thanks for the info

[beckside]

I too am Rh negative. Unable to find any relevant research related to SLE. Might be a good subject for a poll. l

[MonicaW]

I am A rhesus negative.

[traceymcx]

Me too Rhesus negative. Very interesting to find out more about this.

[Hidden]

O Rhesus negative!!!!

[Shazzymartin]

Me too!

[CyndyHP]

I am A negative. I have sale lupus, fibromyalgia and other health issues. I had to have shots while pregnant and afterwards. Both children are A positive. I had problems while pregnant. My son was six weeks early. I was in hospital for 30 days before he came. After my daughter was born I had to have blood transfusions. I am the only one in the family with A negative and only one with lupus. I have checked both sides of my family.

[Minimum]

I'm A Rh negative, and I have SLE, plus discord lupus, and lichen planus of my mouth, and sjogren's syndrome.!! xx

[Pipido36]

I am O Rh positive with SLE , melasma, fibro, raynauds, cealic disease, empty sella syndrome. This is interesting.

[twist1]

I'm B + , I mean how ironic is that "be positive" it's like getting a personal mantra lol

[tracyxx]

I am a neg had a cleft lip. ??.

[Elle-26 in reply to tracyxx]

Hi, Tracy ...My sister is also neg and she has a cleft lip and palate, its interesting to see how mant people either are neg or have had a mum or dad that has been neg .. was just interested to see if it threw any light on things -x-

[mol61]

Another negative here with SLE, Sjorgrens, Raynauds and thyroid. The whole family is also neg, parents and siblings, but so far I am the only one with an auto immune disease, Very interesting would love to see some quantitative results.

[K8KENT]

Yes, I'm negative too!

[Looby]

Yes - A Rhesus Negative. Elle - you appear to have "opened a can of worms" here. I wonder if there has been any research in relation to this?

[Elle-26 in reply to Looby]

Hi Looby, seems most people are negative ... very strange ... I dont think anyone has researched blood types.. I may bring it up with my Rheumatologist when I see him ... Its only a idea though ... Lupus and other secondary symptoms are not up on the list ... only place they may take notice is the Lupus Hospital in London ... I asked because I was getting frustrated in the way a cruel disease takes your life and turns it upside down ... many sufferers not knowing where it will attack next or when ... All I know is one month I was normal, fit and healthy .... within one year Im a wreck ... I hope someone will test this idea of blood type ... it may show something ... it may not ... just a hope Xxx

[Julymoon]

I am Rhesus Negative with Lupus Antibodies as is my father, we had DNA tests to see if there was a family link, my paternal Grandmother was also Rhesus Negative but the Lupus antibodies did not show up on her result but this might have been because the Lupus was not as recognised a condition ten years ago a it is now. However, my grandmother did have many problems that I myself have suffered with so perhaps hers went undiagnosed. Both she and I had miscarriages after 24 weeks and ectopic pregnancies, I had ovarian cancer and premature menopause at the age of thirty and both paternal and maternal grandmothers had early pre 40 years menopause. Several other conditions are mirrored in the family and it seems too much of a coincidence for there not to be a connection. Has anyone else looked into this and found similar family connections?

[terridrag]

i am and i have sjogrens syndrome and ra

[christin777]

YES, I am o- and have had SLE since a teen.

I am now 65. I have always wondered if there was

a connection. I also had mega stress and trauma when young.

I have excellent health and have remained in remission

and off any medication since 1993 when I first became a patient

at: drcastillo.com . I go to Mexico annually for 2 weeks.

There is also a website with interesting information for Rh negatives, such as traits we share: rhnegativeregistry.com.

[christin777 in reply to christin777]

I forgot to mention I also had Graves Disease at 20 and had a (TT), Total thyroidectomy; however, after no thyroid for 40 years, it grew back in 3 1/2 weeks, and now I have a full thyroid again!!!!!!!!!!!!!

[Eric18897]

I've been interested in the connection too. But I'm finding so little research available on the RH- blood type.

Please feel free to contact me to discuss your project. I'm very interested.

[e-mail]

Eric

facebook.com/eric.gartner.16

[samlewis67]

O neg too !!!!