IMPORTANT! ONLINE SURVEY OF AIH

[Guest guest]

Hi everyone!

If you have not been to www.aarda.org to take their online survey of

autoimmune diseases, then I would encourage you to take 5 min. and do

so.

The AARDA is fighting with the National Institute of Health (NIH) in

Washington, D.C. to get an Office of Autoimmune Diseases as well as

funding for more basic research on autoimmune diseases. The biggest

reason for lack of funding is a lack of demographics. A lot of this

is because of the long time it takes most of us to get diagnosed.

BUT, the other reason is because patients with autoimmune diseases

get bounced from doc to doc because of vague complaints and lack of a

single " dipstick " test and don't get a lot of support at their hep

doc's office (i.e. hep c support groups, etc.)

For all of us with AIH this is coupled with the fact that we are a

very tiny minority of hepatitis patients with a basically genetic

liver problem in a sea of viral hepatitis patients who clamor for

funding in research. No wonder there isn't much research in the U.S.

on AIH.

Please, take the time to do the quick survey on the aarda site. The

president, Virgina Ladd, told me last fall that she gets more

inquiries for AIH than any other autoimmune disease and that she

thinks there are more patients than the medical community thinks.

....I'll get off my soapbox for now...thanks for your patience...

Betsy, CA AIH/00