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Support group was born after lupus diagnosis

By Mary Gottschalk

At first glance, it would seem that Jo Dewhirst has nothing in common with pop singer Michael Jackson, British singer and actress Elaine Paige or former Philippine president Ferdinand Marcos.

Yet she does. Dewhirst, Jackson and Paige all suffer from the same chronic autoimmune disease of lupus, and Marcos' death in 1989 was hastened by lupus-related complications.

Dewhirst first had lupus symptoms around the age of 20, but says she wasn't diagnosed until 15 years later in 1975.

"It was a great relief to be diagnosed," says Dewhirst, who lives in San Jose's Cambrian area.

Diagnosing lupus is not simple, in part because symptoms are irregular and it is often mistaken for other illnesses.

Common symptoms include joint pain and stiffness, fatigue, headaches, rashes and hair loss.

"Symptoms can be very vague and differ a lot," Dewhirst says. "Symptoms also may not be very alarming to the doctor, so it can prolong getting diagnosed."

Dewhirst's relief at finally getting a name for her illness overshadowed the fact that at that time, most doctors considered it fatal.

"A medical text I found in the public library in 1975 said it was a fatal disease of young women," she says. "As a young housewife and mother of three, including a baby, I wasn't ready to accept that."

Dewhirst went to a medical text bookstore and bought "a 6-inch-thick book on rhuematological diseases. I took it home and I read it."

The book helped her realize lupus isn't necessarily a death sentence, and after finding a new rheumatologist, she started treatments.

Dewhirst's long journey toward diagnosis and the dearth of available information on lupus inspired her to start the Bay Area Lupus Foundation in February 1978. The group later changed its name to the Lupus Foundation of Northern California.

Relying on the few people she'd met with lupus and a small newspaper advertisement, Dewhirst called a meeting, which attracted 80 people.

"Now we have 1,500 members," she says.

There are 28 sub-chapters and support groups in central and northern California, but Dewhirst says it accepts memberships from anywhere.

"Our website is accessible to everybody, but most people join for the privileges," she says.

These include a 16-page quarterly newsletter, a video lending library, access to a library of more than 800 articles that are constantly updated and information packets personalized to individual symptoms.

In 2006, the LFNC received, and responded to, more than 22,000 individual requests.

Additionally, twice a year, the LFNC hosts conferences, including one on March 29 in Mountain View, as well as Dial-a-Doctor Nights, where medical doctors come into the office and call members who have left questions.

The questions vary a lot, Dewhirst says. "A lot of it has to do with information they've received from their own doctor, or they want to confirm what they're being told is accurate. Or they have questions about treatments, the possibility of taking a different drug or about lab tests."

At least one doctor at each event speaks Spanish, and the LFNC programs include support groups in Spanish as well as English.

Alma Shalvarjian was first diagnosed in 1965, shortly after the birth of her fourth child.

At the time, she was told she had about five years to live.

"I just wasn't hearing that," says the Cupertino resident. "I couldn't focus on that because I had these four little children."

Shalvarjian remembers being put on a high dosage of steroids and being told to stay out of the sun.

"It was a long process of learning what I was dealing with. It was something I didn't want to talk about. I didn't want to mention I had this disease. I didn't like to own up to it for a long time."

Shalvarjian had one good friend she did confide in "about the tiredness and the hurting. My whole body was hurting all the time."

This friend told her about a lupus support group she had heard of in Oakland, which in turn directed Shalvarjian to the LFNC.

"I got Jo on the phone, and it was absolutely amazing. This woman, who I didn't know, knew exactly what I was saying. It was the first time I encountered someone who knew what I was talking about," she says of the call she placed in 1979.

Shalvarjian attended one of the conferences and then offered to help. She has now been volunteering at the LFNC offices at least once a week for 29 years.

Shalvarjian says she has found many doctors are hesitant to direct patients to the LFNC.

"They want to be in charge of your health, but it is a very good thing to have this resource to start to learn more about what is happening, the different organs that are involved and how you can deal with these things," she says.

It was 1981 when Mary Breuleux first learned she had lupus and 1984 when she connected with the foundation.

"I've really benefited from the newsletters and conferences," she says.

An accountant by profession, Breuleux started volunteering with LFNC after she stopped working full time in 2003.

"They're really a good group; a lot of people have benefited from the Lupus Foundation," she says.

"When they have the Dial-a-Doctor Nights, that helps significantly. I was there volunteering a couple of nights. It's really nice to know that you have an organization out there that has information for us and doctors available if you need one or they can refer you to someone. It's just great."

Jane Siebenmorgen, who lives near Almaden Valley, says her personal physician suspected she might have lupus in late 2004.

"She referred me to a rheumatologist on a Friday and by Tuesday I was in the hospital," Siebenmorgen says.

"When I was in the hospital, I was literally dying. Some of the tests that would have leaned toward confirming lupus came back negative. It was difficult to get the definitive diagnosis.

"Even though it's not common to die from lupus now, it can still get that serious.

"You have to treat and manage it. That's where the seminars and classes come in. "

Siebenmorgen says that knowing Dewhirst is encouraging.

"Just knowing that she's lived with this disease for 30 years is an inspiration," she says.

Siebenmorgen says there needs to be more awareness of lupus.

"People just don't understand the disease. They may look at someone with lupus and think they're healthy. They don't understand that you may look healthy, but you're fighting an internal battle and taking all sorts of medication to get your immune system to stop attacking your organs.

"You may have a good day, and the next day you're in bed.

"I always get asked, 'When are you getting off your medications?' Well, never. It's not curable."

After founding the group, Dewhirst was elected president, working the first four years full time as a volunteer.

When she was divorced in 1982 and in need of a salaried job to support herself and her children, the foundation offered her employment.

"It's been very rewarding work because it's been my passion," Dewhirst says. "I realized from the beginning how important it was."

The Lupus Foundation of Northern California sponsors its spring conference on March 29 from 1 to 3 p.m. at the Park Pavilion Building, adjacent to El Camino Hospital, 2500 Grant Road, Mountain View. Dr. Joseph Isaacson, a practicing rheumatologist for 28 years and now an adjunct professor at Stanford University Hospital, will speak on the clinical aspects of lupus, currently available treatments and treatments on the horizon. A question and answer session will follow. The meeting is free and open to the public.

For additional information on the LFNC visit www.balf.org or call 408.954.8600 or toll-free to 800.523.3363.