Wegener's Granulomatosis and Kidney Disease

Yes, someone in my family has this very rare, very cruel disease. The symptoms and difficulty of diagnosis are a part of my first novel, "Sara's Search." It got my family member's kidneys as well. So, here is some info for those searching. Please contact me if you want to discuss this disease with someone who has been close to another with it for twenty years now.

Websites:

Symptoms from Vasculitis Foundation:

http://www.vasculitisfoundation.org/node/40

Here are most of the symptoms. They are vague about skin problems which can include purpura and nodules. May have a positive RA blood test (Rheumatoid Arthritis) or even mononucleosis test. Trachea can also be affected, apparently more often in young girls. Arthritis can be so severe person is unable to walk, (ankles, knees and hips) or even hold a paper cup to drink out of. If joints are pressed, can cause purpling.

Vasculitis Foundation website:

http://www.vasculitisfoundation.org/

Advise you join this organization as soon as diagnosed. They know more than most doctors about this disease and are there to help you. There in an annual VF meeting, which I attended one year--excellent information and the chance to meet others with vasculitis.

The John Hopkins Vasculitis Center
http://vasculitis.med.jhu.edu/typesof/wegeners.html
Even more info. Warning--a few graphic photos.

AND IF YOU END UP WITH KIDNEY DISEASE/ON DIALYSIS

Medical Travel
www.dialysisatsea.com
Travel on cruise ship and do your dialysis.

Dialysisfinder:

http://www.globaldialysis.com/centres.asp

They have 13,500 centers in 143 countries! Search for where you'd like to go.

National Kidney Foundation
http://www.kidney.org/
Biggest organization for kidney patients.

American Kidney Fund
http://www.akfinc.org/
Where to donate and why.

National Kidney and Urologic Diseases Clearinghouse
http://kidney.niddk.nih.gov/
Links to lots of other places.

If you have any suggestions for this page, please let me know!