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We would like to thank Professor Gross and the members of the Vasculitis Patient Support Group for their kind invitation to participate in this wonderful meeting. We are very happy to be here and to have the opportunity to meet with and learn from other vasculitis patients, family members and the wonderful medical professionals.
The Wegener?s Granulomatosis Association was created in 1986 and over the past 17 years, the group has grown to about 4,500 members. Although most of our members are Wegener?s patients and their family members, we also welcome patients with other vasculitis diseases to our group.
Our organization has three objectives:
1. To raise awareness of Wegener?s in the general public and medical community
2. To educate patients and family members about the disease
3. To encourage research on etiology, epidemiology, diagnosis, treatment, and patient relief from the complications of living with Wegener's granulomatosis.
Awareness: We would like everyone to be familiar with Wegener?s granulomatosis. We believe by raising awareness of the disease and making people aware of the disease more patients will receive a quicker diagnosis. Studies have shown that the earlier a patient is diagnosed, the more quickly they regain their health and the less likely they are to suffer permanent organ damage.
Education: We want all of our patients and their family members to understand and be knowledgeable about the disease. We want our patients to recognize the symptoms of the disease and to understand the medications they are taking. We encourage our patients to learn as much as possible about the disease and to work with a team of experienced medical professionals to treat the disease. We believe knowledge is key to managing the disease and to living successfully with it.
Research: In early 2002, we established the WGA Small Grant Research Program to encourage researchers to study Wegener?s granulomatosis and other vasculitis diseases. We have already awarded three grants for research and hope to award several more grants this year. We believe it is very important to encourage research on vasculitis diseases.
In addition to our Awareness, Education and Research Programs, this year we joined with other autoimmune and vasculitis patient support groups to advocate for additional governmental funding of vasculitis research. Our National Institutes of Health estimates that over 22 million Americans suffer from some form of autoimmune or vasculitis disease; resulting in treatment costs estimated at $100 billion a year. We hope by presenting a united front that we will be able to raise awareness for the need for medical research.
We feel the future is bright for all vasculitis patients. The medical community is becoming more and more knowledgeable about how best to treat vasculitis diseases. Patients are being diagnosed earlier, treatment options are improving and better drugs are being developed to treat the diseases.
Many of our members ask us what they can do to help the organization. We encourage all of our members to work to raise awareness of the disease in their local communities. Make sure that all the medical professionals in your area and your families and friends are familiar with the disease. Participate in medical research trials whenever possible. By taking an active role you will not only be helping yourself, you will be helping many others.
The founder of the WGA, Marilyn Sampson, had a dream of uniting Wegener?s patients around the world. We now have members in 58 countries and I think she would be pleased by our progress.
Thank you again for your kind attention. I would also like to extend a special thank you to Peter and Inge Zelewski for their warm hospitality. We are very fortunate to count them as friends.
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