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.

Lake Fong, Post-Gazette Ed Becker of Ellwood City started an international Web network on PAN and often spends his lunch hour Downtown at the Carnegie library doing research on it. Click photo for larger image. About polyarteritis nodosa In polyarteritis nodosa, or PAN, segments of medium-sized arteries become inflamed and damaged, reducing the blood supply to the organs. The cause is unknown, but reactions to some drugs and vaccines may cause it. Often fatal if not treated adequately, it usually develops in people ages 40 to 50, according to the Merck Manual of Medical Information. High doses of corticosteroid, such as prednisone, can prevent the disease from worsening and induce a symptom-free period in about a third of patients. Treatment to control high blood pressure is often needed to prevent damage to internal organs. Still, vital organs may fail or a weakened blood vessel may rupture. Kidney failure is a common cause of death. The PAN/autoimmune discussions are held 9 to 10:30 p.m. Sundays at www.pansupport.org.

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 she took ill, members of her family tried to find answers in a number of places, including the Internet. There was precious little information that would point them to PAN.

But that has changed. Her son, Ed, created a Web site to provide as much information as he could gather about PAN to reach as many people as possible.

Becker, 42, who works in Web development at Mellon Financial, Downtown, spent nights and weekends pulling it together. It went online in March 1999 and can be reached at www.pansupport.org.

"Initially, I created the site simply as a Web class project. I didn't even check it for a couple of weeks. When I did bring up my Web site I saw that 30 visitors had been there. It was then I realized that there were people who needed this information."

Word spread, and e-mails arrived daily. Most wrote to ask how they could get in touch with others who also had the illness.

"It's interesting," said Becker. "They weren't seeking medical help as much as they wanted to meet someone else with the disease. That's exactly what my mom had asked for after her diagnosis. I think it's important that someone with a rare illness knows someone else is going through the same thing."

He has since created an online newsgroup. Soon doctors with an interest in PAN were tapping in and chatting with patients. A network developed.

Nearly five years since Florence Becker's death, the PAN Research and Support Network has become the world's largest online community for this disease -- drawing more than 350 PAN patients, family members, friends, medical professionals and researchers.

Becker logs on every evening after dinner to answer e-mail inquiries. On Sunday nights, he moderates chat sessions that give PAN patients the opportunity to ask questions of doctors and medical researchers.

He doesn't charge for participation and hasn't earned a penny for his efforts. "In a very real way," he said, " I believe that this is what I've been called to do, to help others."

Last month, the network commemorated its fifth year with the release of a resource CD, "Living With PAN 2004: An Internet Guide to PAN and Autoimmune Disease."

The CD is a collaboration between Becker and Birgit Wiedenmann-Naujoks, a multimedia developer in Hamburg, Germany, who joined the network after her mother was diagnosed with PAN. She's also launched a German mirror site to Becker's. Proceeds of the $7 CD will be used to expand the network.

Dr. Eric Hoy, a researcher at the University of Texas Southwestern Medical Center in Dallas who studies immunology of autoimmune diseases, brings a strong background to the network and its weekly chats. He found the PAN site when doing research on the Web.

"I began to correspond with Ed, and I read the terrible stories from some of the patients who were in the network. I went back to my textbooks, most of which dismiss the disease in a paragraph or less, and the records of some of the patients I have seen over the years."

Hoy is learning more about PAN from people around the world.

"I have frequently seen people who were newly diagnosed come here in a panic [believing] that they had a fatal disease," he said. "The support of the 'old-timers' reassures the newcomers that the disease, while serious, is not a death sentence."

The site also has become a resource for researchers studying autoimmune conditions and for physicians. Recently the National Institutes of Health awarded a five-year, $6.25 million grant to establish the multicenter Vasculitis Clinical Research Consortium, which will facilitate clinical investigation into autoimmune diseases. Becker has been discussing with the study's director a role for the PAN network in the research. Becker recently experienced a reality check.

"A few months ago I found a message posted on a immunology newsgroup from someone who was asking for information on PAN because his mother had just been diagnosed," he said. "As I read on, I realized his situation sounded exactly like mine. This person asked if there was anyone else out there with PAN. I immediately felt the need to write to this person and tell them about my group."

Then he discovered something incredible: "The author of this posting was ... me. It was an archived message to an immunology newsgroup that I had posted in August 1998, when I was desperately trying to find a resource for PAN patients. Now, here I am, the director of the very group that I needed five years earlier.

"Life is ironic, isn't it?"