Questions regarding your Story on Vasculitis

1. What is your name? Where do you live? Country/City

2. When were you (or your relative) diagnosed with vasculitis?

3. Do you have a specifically classificied form of vasculitis (such as Wegener's Granulomatosis)?

4. What symptoms did you (or your relative) have prior to your diagnosis?

5. How did you cope with the news that you had such a rare disorder? What was the initial reaction on the part of family and friends?

6. Describe some of your experiences with the medical staff that has to deal with such a rare illness. What are the challenges and obstacles in getting information and the right treatment for a disease like vasculitis?

7. What have been good and positive experiences with the medical staff?

8. What are some of the medications that you (or the patient) have taken or are currently taking? Describe side effects to these drugs and how you (he/she) handled them.

9. How much has your normal life and routine been affected by vasculitis? What have been the positive and negative effects of your illness on your family. Respectively, how have you dealt with the challenges of caring for someone with vasculitis.

10. What is the most difficult thing in dealing with a long term illness like vasculitis? How do you keep on fighting when things get to the worst point?

11. How important is having a support group in your recovery?

12. In what ways has the Internet been a part of your understanding the disease?

updated 20.09.2004