Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is AS really that uncommon?

I have to ask this question. I have read the literature that states how uncommon this disease is and that a small percentage of the population has it. I live in a small rural area and within a relatively small circle of acquaintances I personally know of 4 people suffering from this disease. I just think of that as odd.

I have wondered this myself. Studies from Europe say 2 to 5 per thousand and something I red from Mayo recently gave the same number. That is reasonably common. That would be well over a million people with the disorder in the U.S. A rare disease is defined as one with less than 200,000 people in the U.S. affected.

The Spondylitis Association sponsored a study saying it could be as much as 1 in 100 (am recalling here), making it as least as common as rheumatoid arthritis. But the methodology seemed off to me. An association has a vested interest in showing how common its disease is because it helps justify additional funding.

What I do know is that this a little known disease. My daughter's GP had clearly never heard of it, we've been to ERs where doctors have not heard of it, and absolutely no one I know has ever heard of it, including a sister who is a nurse and has a PhD in public health. There are only 400,000 people in the US with MS, for example, but it is well known even among the nonmedical population. (I also happen to personally know three people with MS and only my daughter with SA.) Even ALS, whose patient population in the US is 30,000 is way better known, thanks, I guess to Lou Gehrig and, more recently, the ice bucket challenge.

I wish I had never heard of it. I'm hopefully gonna start cimzia today.

Hi,

The 1 in 100 stat is the same as The Arthritis Society in Canada states. Problem is that it was under-diagnosed in too much of the population for too many years. As the medical community learns more, they are able to diagnose it more easily. The same goes with the ratio of men to women. When I was diagnosed almost exactly 13 years ago now, I was told by my GP that it was extremely rare for women to get AS. The ratio of men:women was at that time 10:1. Today, it is generally believed that the ratio is closer to 10:7 or 5:3 because rheumies are learning more and adjusting how they diagnose.

Still, we seem to be the poor cousins to almost everything else.

Hope that clarifies things a little.

Warm hugs,

Hi, Bax1:

We have a lot of very useful literature here on KickAS; I know it is not so easily sifted through, however. Here is a pertinent example:

(1) Ankylosing spondylitis:

Ankylosing spondylitis (AS) was first described by Connor in 1692 but the clinical features have only been characterized in some detail over the last one hundred years.

The disease affects approximately 1 - 2% of the U.K and American population - therefore it is not a rare disease.

However one of the greatest problems is that it takes 5 - 10, or even 20 years to make the diagnosis, during which time the patient suffers from recurrent bouts of backache, muscle stiffness and is often accused of being "neurotic" or malingering .

The main reason for "delay to diagnosis" is that one of the definitions for the disease is "presence of sacro-iliitis" on X-ray examination of sacro-iliac joints: - However it takes 5 to 10 years for sacro-iliitis to develop.

Therefore the patients are told "YOU CANNOT HAVE "AS" BECAUSE YOU DO NOT HAVE SACRO-ILIITIS".

(2) Discovery of the link between HLA-B27 and AS.

In 1973 one of the greatest discoveries in "AS" was made by 2 groups - Brewerton's group from the Westminster Hospital in London and Terasaki's group from Los Angeles: They showed that 96% of AS patients carried the "white cell blood group" HLA-B27 (=Human lymphocyte antigen-B27) which is present in all nucleated cells including the bone and cartilage cells of the lumbar spine, whilst the frequency of this blood group marker in the Caucasian populations of the USA or U.K. is 8%.

Furthermore, the remaining 4% who are HLA-B27 NEGATIVE, usually
suffer from psoriasis or bowel disease or the diagnosis is WRONG.

Clearly, possessing HLA-B27 has something to do with the disease.

In 1975, we set up the "Ankylosing Spondylitis Research Clinic"at the
Middlesex Hospital in London, to answer the question: Why B-27 in AS ?

(3) HLA-B27: The size of the problem.

It is known that 8% of the US/U.K. populations are HLA-B27 POSITIVE.

Since the population of the U.S is 275 million, there are 22 million people in the U.S. who are HLA-B27 POSITIVE and in the U.K. there are 5 million who are also HLA-B27 POSITIVE.

It is agreed by many workers, that 20% of HLA-B27 POSITIVES have some symptopms of AS.

THUS: THERE ARE 5 MILLION AMERICANS with some symptoms of AS.

THERE ARE 1 MILLION ENGLISH SUBJECTS with some symptoms of AS.

MOST OF THESE ARE NOT BEING TREATED !!!

It is our suggestion that the discovery of the link between HLA-B27 and "AS", COULD RESOLVE THIS PROBLEM.

HEALTH,
John

I was at an open day about AS recently and one of the speakers said the awareness needs to be improved. She said in the UK there are twice as many people suffering with AS as there are suffering with MS, which is quite shocking as there is a greater awareness with MS.

At the same thing as well patients were asking the doctors about the NSD and he said he was skeptical as there wasn't enough research into it. They make me laugh as there supposed to be 'Specialists' and they only believe what they read in books, not feedback from their own patients.