Reply to I suspect that I have ankylosing spondylitis. My GP is dismissing me.

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]It's extremely rare. Only 3 million in the US.  My husband and DS have it. So far DD hasn't shown signs. But it is a very serious diagnosis and be done only properly by a gene test.  Dr. Laukaitis (now recently retired) in D.C. was the only proper practitioner to see. Good Rheumatologists would refer their clients to him.  My son and DH are seeing a referral phsycian right now but are not happy.  Check for specialists in major cities. Don't go to just any rheumatologist
[/quote]

[b]A condition that affects 3 million people in the US is not rare[/b].  In the US a rare disease is defined as one that affects 200,000 or fewer people.
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However, I suspect that the number includes all the spondyloarthopathies, which as I have been saying are often referred to generally as ankylosing spondylitis. Take this article that cites the 3 million number: https://www.webmd.com/ankylosing-spondylitis/who-gets-ankylosing-spondylitis

It states: "People with ankylosing spondylitis may also have another inflammatory disorder, such as psoriasis, ulcerative colitis, or Crohn’s disease." This seems to be pretty clear evidence that in that 3 million number they are including not just AS but also other types of spondyloarthritis, specifically psoriatic arthritis and enteropathic spondyloarthritis.

Johns Hopkins maintains that in the US 1.5 million people have psoriatic arthritis, a more common form of spondyloarthritis, so 3 million for the ankylosing spondylitis subtype must be wrong. (https://www.hopkinsarthritis.org/arthritis-info/psoriatic-arthritis/)

Ending with a general note that a positive HLA B27 is NOT diagnostic for AS. About 7% of the population in the US is positive and the overwhelming majority do not have AS. There is simply an association of AS with a positive HLA B27, but it doesn't have to be positive to have AS, especially if you are AA.

[/quote]

Incorrect.  read below:

Ankylosing spondylitis is relatively rare, affecting about 1 in 1,000 people. It is believed that people with the gene called HLA-B27 are at the greatest increased risk for developing ankylosing spondylitis, not everyone with the gene develops the condition. Ankylosing spondylitis is more common in men.

What is Ankylosing Spondylitis? - Pfizer[/quote]

A rare disease is defined in law: "The Orphan Drug Act defines a rare disease as a disease or condition that affects less than 200,000 people in the United States."
 https://www.dcurbanmom.com/jforum/posts/quote/30/27411481.page[/quote]
Wrong link! Right one: https://www.fda.gov/patients/rare-diseases-fda[/quote]

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