Learn how and why the PAN Network was created
Florence and Edward Becker
The PAN Support Network 2010 (PSN) is dedicated to Florence Becker who passed away from complications of PAN on September 12, 1998.
It was her death that resulted in the creation of the PSN to help patients seek knowledge and support about PAN.
Read a detailed article about why the PSN was created.
"Early in 1998, Florence Becker of Valencia, suddenly became ill. She had developed a low-grade fever, intense headaches, frequent nosebleeds and was extremely tired.
Tests ordered by her doctor were inconclusive. Her condition worsened, and in July she was admitted to a hospital. By that time, her kidneys were working at 2 percent capacity and her blood pressure was critically high. The cause baffled everyone involved in her treatment.
Finally, a biopsy of her kidneys showed that she had polyarteritis nodosa or PAN, a rare autoimmune disease that has a high fatality rate if not treated early. Her diagnosis came too late. She died in September 1998."
When my Mom's doctor told us this news in July 1998 we were stunned. Why did this happen? What exactly is the disease? What is the prognosis? Are there hospitals that treat PAN?
My first response was to use the Internet to find more information about this rare illness. Although I did find some information on the Net, it was mainly written for doctors and not the layman. Moreover, I wanted to connect with anyone who had the illness to learn more about it.
We had many questions, but not a lot of time to find the answers.
After she passed away from complications due to PAN, I felt it was critical to create a source of information about this illness. Surely there were others like myself who were searching the Internet for information and support.
In February 1999, I created the PAN Support Web Site and mailing list to help visitors find information quickly and to meet others who have the illness. The results have been tremendous as a community of more than 400 PAN patients and caregivers from all over the world have connected via the PAN Support Mailing List. I encourage to join this mailing list to connect quickly to get support in dealing with this rare and devastating disease.
What is Polyarteritis Nodosa (PAN)? What are Vasculitides? Is there any difference to Autioimmune Disorders? What are the symptoms? How is it treated? What are possible causes?
It's important the patient has a basic understanding of these three concepts to get the fullest picture of the disease. .
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