I'm posting this to bionet.immunology in the hope that it may prevent
serious damage to a patient whose physician may not be aware of the
disease. Hope this long posting doesn't upset anyone.
Persons with persistant sinus/nose/ear/throat problems which do not
respond to normal treatments might consider an autoimmune disease.
There is an autoimmune disease, Wegener's Granulomatosis (WG) which is
rather rare, but very serious. It is not contagious, and is not
hereditary so far as is known. It is invariably fatal unless treated.
Because the symptoms are so similar to various other common diseases,
it is often not correctly diagnosed. Early diagnosis is essential to
prevent serious organ damage.
WG is a systemic disease, a form of vasculitis which affects mostly
smaller blood vessels, down to capillary size, thus leading to cell
death. About 1 in 40,000 develop the disease. It can strike at any
age, and equally among both sexes.
It affects the various organs with the approximate frequency listed
with most frequent first: sinus, nose, ear, lung, joints, kidney,
trachea, eye, skin, peripheral nerves, central nervous system.
The first sign is usually an inflammation of one or more of the
organs mentioned above, and which does not respond to normal
treatment methods. Other symptoms can include loss of appetite,
weight loss, fever, and fatigue.
There is a blood test, the cANCA test, which is about 95% accurate
in diagnosing the disease. Final diagnosis is usually based on a
biopsy.
Treatment is usually by a rheumatologist typically using cytoxan
and prednisone or similar drugs over a period of about one year.
95% of patients achieve remission.
There is an excellent support group which puts out a bi-monthly
newsletter for an annual due of $10. (Donations gratefully received).
Wegener's Granulomatosis Support Group
P. O. Box 28660
Kansas City, Missouri
64188-8660
1-800-277-9474
1-816-848-4444 (fax/phone)
Their web page at http://www.wgsg.org has lots of useful
information and links. There is an e-mail group (usenet listserve
group) at wegeners at weareb.org
Please e-mail the group if you have questions or concerns about
this disease.
P.S. I'm not a physician. What I've written above has been derived
from experience and different publications. I can't be held
responsible for the accuracy of said information.
