Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Women vs. Men with AS

The Arthritis Society says the ratio is 3:10 women:men. Some put the ratio at 5:10. I would hazaard that the women here at KA believe it's closer to 50/50, but no-one's doing the research on women at this point. But then, look how long it took them to start researching women and heart attacks.

Hugs,

Thanks, Kat. 3:10 does seem low to me, especially from what I see here.

I suspect that some doctors aren't going to believe you no matter what you show them anyway. They think they know it all (afterall, they are the doctor!) or at least more than you could possibly know. Some of them get highly offended if you think you know something they don't know, or, heaven forbid, question them.

Thankfully, not all doctors are like this, but I've seen my share of doctors that fit the discription, and act like your a hypochondriach when you try to tell them how you feel, or what symptoms you are having. I actually had one doctor tell me "boy, you're really a mess aren't you", and it wasn't said kindly.

Some things I've heard and some things I've wondered about... doesn't mean I agree with them or that they are from a valid source ...

Women have a higher pain tolerance (said to be that way so that they can endure childbirth)

When they do have pain, women tend to take a pain reliever (it's the pain from the inflammation that tells the brain the body is injured and tries to repair itself which can cause fusion found in advanced stages of AS. If women treat their pain rather than endure it then their body isn't going to try to repair itself as much).

Women go to the doctor more than males. I'm wondering then why so many more males get diagnosed with AS if this is the case. I don't know why but I've always been around tough guys that never seem to see a doctor unless it's in an emergency room.

Women utilize self help resources more than men. I suppose support groups could be considered a self help resource so therefore might have a greater than average ratio of male to female.

Does anyone know how this gene passes anyway? It's been too long since I studied genes but I'm guessing it's not on the Y chromosome. I've heard that if you have the HBLA-27 gene you have a 50% chance of passing it on to your children. And that if you have AS and you have a child, you have a 1 in 5 chance that they too will get AS.

I've just can't stop wondering what side of the family I got it from. My mom sometimes had neck pain but nothing significant. She to this day has to take Excedrin first thing in the morning for headaches. She claims that she doesn't have anything like this and I must have got it from my father. I've only seen my father a few times so I don't know. Then there's my mother's somewhat nutty theory that it was the DDT that they used to spray in the fields where she grew up or the nuclear power plant she was downwind from. I say somewhat nutty because I laughed hysterically the first time I heard her say that but none of my four siblings on her side have had children. All the females have reproductive problems and my brother has had enough girlfriends he should of had a child by now. Our families on either side have had no problems having children. My two sisters are the only ones that share the same father. My brother has a different father and so do I. Both DDT and radiation alter genes.... sooo who knows. Are there any trends for radiation or DDT exposure for anyone else in the users group? LOL joking of course.

Anyway back on subject, I'm not frustrated with the fact that it is considered to be rare for a female to have AS, I'm just frustrated with the point at which they finally say you have it, especially if your symptoms aren't "typical." I mean it seems like you have to be totally immobile before they finally say, yup, looks like you do have AS afterall. I think part of it is what Ankylosing Spondylitis means. I can't think of it off the top of my head but it's something about fusion and aging. Neither of which truly signifies AS to me anyway. I mean, the fusion is an advanced stage of AS and those who get AS generally get it when they are younger.

All I can say is, if you are convinced you have AS but the docs say you don't or you probably don't have it because you are female and it's mostly found in males, just make sure you get the treatment you need. If you don't, change doctors until you get it. I think I'm on my 5th doctor now after years of hurting and being shoved meds I finally got referred to an orthopedic and now a rheumy. Just don't listen to the generalizations because this disease isn't well known and chances are, the doctor you see may have never seen someone with AS (at least knowingly). Don't give up!

Sharon

It sems allmost even on here .And I have met just as many women as men with as .So who knows how accurate these counts are...Steve

Ho, I hear that. I think I may have inherited AS from mom, but her doc refuses to run the tests. He had the gall to tell mom..."so, you're a doctor now, are you?" Said she can't possibly inherit it from her daughter, but the **** refused to consider that perhaps I inherited it from her... Hellooooo!!!

Sharonb...(Does anyone know how this gene passes anyway? It's been too long since I studied genes but I'm guessing it's not on the Y chromosome. I've heard that if you have the HBLA-27 gene you have a 50% chance of passing it on to your children. And that if you have AS and you have a child, you have a 1 in 5 chance that they too will get AS.) I have recently found out that I have recieved my a.s. from my mother she is hlab + but has no symps..lucky!..But it seems allmost every person alive on my mothers side has a related disease...hummm..Steve

Scotty, how could you !!!!!

.....anyway, I agree with everything Scotty says

HLA B genes are inherited as part of the "major histocompatibility complex" (MHC) on chromosome 6 - HLA B genes are class I MHC genes.
http://www.cehs.siu.edu/fix/medmicro/mhc.htm

If you have one copy of the HLAB27 gene (heterozygous for HLAB27) meaning you got one copy from either your mother or your father, your chance of passing the HLAB27 gene to a child on is 50% as you said. If however you are homozygous for HLAB27, meaning you have two copies of the HLAB27 gene (rare but happens) one from your mother and one from your father, your chance of passing the HLAB27 gene on to a child would be 100% - of course passing on the HLAB27 gene marker is not the same as passing on the illness- note that the influence of multiple genes is implicated in cause of AS/spondyloarthropathies, genetic contributions are more complex than just HLAB27 -see old post links below.

discussion of HLA and related topics:
http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/H/HLA.html

Quote:

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"Histocompatibility molecules are glycoproteins expressed at the surface of almost all vertebrate cells. They get their name because they are responsible for the compatibility — or rather the lack of it — of the tissues of genetically different individuals. Monozygotic ("identical") human twins have the same histocompatibility molecules on their cells, and they can accept transplants of tissue from each other. The rest of us have a set of histocompatibility molecules that is probably unique to us. A graft of our tissue into another human will provoke an immune response which, if left unchecked, will end in the rejection of the transplant. So the histocompatibility molecules of one individual act as antigens when introduced into a different individual. In fact, the histocompatibility molecules are often called histocompatibility antigens or transplantation antigens...

Although histocompatibility molecules were discovered because of the crucial role they play in graft rejection, clearly evolution did not give vertebrates these molecules for that function. So what is their normal function? The answer: to display antigens so that they can be "seen" by T lymphocytes.


The antigen receptor on T lymphocytes (or T cells, as they are commonly called) "sees" an epitope that is a mosaic of the small molecule in the groove and portions of the alpha helices flanking it.

The small molecules are enormously diverse. They probably represent fragments derived from all the proteins present within the cell. These would include:

1. fragments of normal cell constituents (These do not normally elicit an immune response.)
2. fragments of molecules encoded by intracellular parasites (like viruses);
3. fragments of proteins encoded by mutated genes in cancer cells. "

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more information here :
http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/T/Transplants.html#typing

here is a link to an old post with more information on the genetics of AS, with apologies for the broken links in first section (broken in the move of the forums to our current home) - the links in the rest of this old post should still work
https://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=174539&page=&vc=1

additional old post on inheritance patterns and genetics (same apology for any broken links):
https://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=166341&page=&vc=1

Inspired by you, dear Evelyn, I googled "Ankylosing Spondylitis Women" and was directed to the AS research website that runs in conjunction with NASS. There were a couple of interesting articles, including one by Dr. Mohammed Kahn in which he statest that there is often a delay in diagnosing women because we present differently than men.

Dr. Kahn

And another one from PubMed that talks about radiological changes in women v men.

PubMed

Interesting.

Hugs,

men go to doctors when they think they're dying.