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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Quote:
am I the only one who finds it exciting that somebody, somewhere, has bothered to try to figure out what's going on with the gender-based differences in this disease? Am I the only one who gets that maybe the reason for the lag in diagnosis in women could be based in this variance:
Sorry if I sound frustrated, but the ratio of men:women is not the point of this article and it frustrates the crap out of me that women and the progression of AS in women are constantly (apparently) being ignored. Does this genetic difference make a difference? I don't know, but it is proof positive (to me) that there is a difference. And if more GPs and PCPs and rheumies knew about these things, if researchers bothered to do studies on women, maybe women like our Karen and Sue wouldn't be lost in diagnosis limbo. It has to start somewhere and this seems a pretty good start - figuring out that there is a genetic difference in where the disease sits in men and women (if that's what this article indeed says - my brain twitch activates automatically after a point). Why does it appear that AS is severe in different ways in both genders? Why does it appear that severe kyphosis is more common in men? Why does it appear that fusing doesn't occur in women until later in life? I don't know about anyone else, but I want to know these things and this is the first time I've seen anything beyond Dr. Monika Østensen and Dr. Harald Østensen's research of over 10 years ago that even talks about women with AS in a research capacity. One other article I've found (one dating back to 1959) acknowledge that women get it more frequently than was generally thought and noted differences in progression, but again, nobody actually bothered to look into the whys, the wherefors, and the hows. And nobody was actually listening in this particular case either, because this doctor felt in 1956 (the year the research was done) that the ratio was closer to 5:1 and for another 40 odd years, the mainstream medical community still believed the 10:1 crap.
OK, I'm going to get off my soapbox now. grumble grumble grouch. I need more coffee.
Warm hugs,
hi Kat 
just a big thank you. 
i did read this with interest 
but was afraid if i responded, i'd get myself all worked up again 
i've wondered the same kinds of things.....
can i not get a spondy dx because i don't have the "classic" symptoms other than the crazy SI and pain at the entheses, but not enough "proof" for a dx, at least by the docs i've been to.
or, should i be careful not to get too hung up on the AS dx because i really have something else, and i don't want to miss that while focussing on the wrong thing.
so, the two pronged approach: go to rheumies and go to other kinds of docs seems to be my best bet.
and i know there are a number of people here that are in the same boat,
they just don't write as much,
but i figure anything that i can figure out, will hopefully help someone else....
thanks again,
Sue
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Joined: Mar 2007
Posts: 386
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Mar 2007
Posts: 386 |
I sure hope the first rheumatologist I was referred to doesn't ever aspire to become a medical writer - he told me that I absolutely did not have AS or any related disease because it was 20 TIMES more common in men than women. And he made this statement before he did any bloodwork. He never really did do any kind of complete physical exam.
Later my GI doctor, whom I actually like & does actually concede that I do definitely have SOMETHING wrong me, also doesn't believe I have AS because "he's never seen a woman with AS" either.
Janet
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Joined: Jun 2003
Posts: 3,581
Royal_AS_kicker
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Royal_AS_kicker
Joined: Jun 2003
Posts: 3,581 |
Kat, the ANKH gene research went a bit quiet for a while, I know M A Brown who's a leader on the team that discovered the new genes last year IL-23R and ARTS dismissed it a few years back as a factor in AS but I find things like this: Link to ANKH gene function table.......Maybe the difference between AS and just spondy is a gene mutation in ANKH. But then when they do the disc removal surgery the idea is that the vertebrae fuse themself over time. http://www.ncbi.nlm.nih.gov/IEB/Research/Acembly/av.cgi?db=human&l=ANKH======================================================================== Extract from the following link:http://hmg.oxfordjournals.org/cgi/content/full/16/10/1233 Indeed, some data suggest that the mutations in ANKH may cause ankylosing spondylitis and sclerosis of the craniofacial bones and abnormal modeling of the tubular bones ======================================================================= There was a description of an ANKH genetically engineered mouse it was very similar to a B27 one, except the feet were broad and wide. Dave
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Joined: Apr 2008
Posts: 386
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Apr 2008
Posts: 386 |
Sue if you want to see my rhuemy let me know. He has about three or four different offices one of which is may a 2-3 hour drive for you if you think you could do it. He's a bit weird, but very to the point. Although it may take a couple visits with him to get a Dx.
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Thanks for this Dave. Sadly, my brain twitch kicked in almost immediately upon trying to process this info. I think I may be caffeine deficient. Although, admittedly, I'm also exhausted - pulling 18 hour days about 4 days a week right now between work, rehearsals and rehearsal prep. The twitch only used to kick in after a few minutes of reading. These days, my brain just wants to run away!!!  Warm hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Yup, Doug, he is.  I go searching for things on the net and often find his name attached somehow. Hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Hey Karen, I do apologize for the petulant tone of my post yesterday. I'm a little touchy these days, I think.
I have outright asked Dr. I about the need for research on women and AS, and he indicated that some needs to be done. Problem is (and this is from personal research, not from Dr. I) getting the funding for it. Somehow, we have to make it a cause that the people with the big bucks will care about. I'm now looking into doing advocacy through The Arthritis Society on this and have been in discussion with people there who can help me start taking a more active role.
As for the 2.5:1 ratio, I truly do not think it was meant to be reflective of the ratio in the actual study, but an overall AS ratio.
Warm hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Jun 2003
Posts: 3,581
Royal_AS_kicker
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Royal_AS_kicker
Joined: Jun 2003
Posts: 3,581 |
Kat,
it's got to the point where I do n't read much medical stuff these days, I just want a cure, or win lotto neither seem likely.
Do n;t you go cooking off the AS again, you always flare doing the shows!
dave
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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OP
Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Dave, you are a sweetie. Thank you for the words of warning. I'll try not to overdo it.  Of course, the King has now torn his achilles tendon and is laid up for the foreseeable future with a cast up to his knee (non-weight-bearing for the time being - HAH!! As if that's going to actually happen), so my workload just tripled as I must work fulltime, rehearse, tend to the King and do all the household chores myself. Love that you don't read the medical stuff anymore. I keep on plugging. Don't know if that make me smart, stupid or brain-dead. Love and hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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