Wish Book: Understanding lupus is the first step in fighting the disease
You may have heard of lupus but probably don’t really know what it is. That was true of San Jose resident Jane Siebenmorgen in 2004, when she started feeling fatigue while on a family trip to Europe.
Within a year, she was tired all the time and her symptoms had grown to include weight loss, hair loss and circulatory problems in her fingers, which would turn white, then dark blue and then red. Siebenmorgen went to her doctor — the same one who had stitched up her chin when she was 4 years old — who suspected she had lupus and referred her to a rheumatologist.
The following Monday, Siebenmorgen wasn’t feeling well at work and co-workers called 911 after discovering her heart was racing at more than 200 beats per minute. That started a three-week hospital odyssey of tests, talks among specialists and scary moments for her family. While in the hospital, she suffered two grand mal seizures, a stroke and developed a bacterial infection.
“At one point, a doctor prepared my family for the worst and said, ‘She’s dying and we don’t know why,’ ” Siebenmorgen said.
In the end, the specialists agreed with her doctor that the only logical diagnosis was lupus. They started her on a battery of medications and her condition improved. But it was only the beginning of her battle with the autoimmune disease, for which there is no clear cause and no cure.
“In the beginning I had to ask for help with regular daily activities, which both infuriated me and terrified me,” said Siebenmorgen, who had to take medical leave from her job. “There were lots of tears at first but I also had an odd sense of relief because now I knew the name of what I was fighting.”
It was her younger sister, Carol Siebenmorgen, who discovered the Lupus Foundation of Northern California when she was researching the disease, hoping to calm her sister’s nerves. The foundation had a conference coming up in San Francisco that Jane attended, and it turned out to be a life-changing moment.
“I realized I wasn’t alone, and there were so many others fighting the same battle and so many people fighting alongside of us,” ” said Jane Siebenmorgen. Carol Siebenmorgen joined the foundation’s board in 2006 and has been a member ever since.
That shared sense of community coupled with newfound knowledge about the disease was what Jo Dewhirst had in mind when she founded what was then known as the Bay Area Lupus Foundation in 1978. Diagnosed with lupus in the 1970s, Dewhirst was disappointed in the results when she tried to research the disease. She started the foundation as a way to provide patients with accurate information and support. Dewhirst, who died in 2022, chaired the foundation’s board from 1978 to 1982 and served as executive director from 1982 to 2009.
In a video interview posted on the foundation’s website, www.lfnc.org, Dewhirst recalled the first meeting in November 1978 featuring a doctor from Stanford at De Anza College in Cupertino. To her amazement, 150 people showed up — and they stayed around talking to each other afterward.
Today, the Lupus Foundation of Northern California has 18 chapters throughout the greater Bay Area, and each one has about 100-300 members. Wish Book readers can help the foundation continue to offer services and programs including virtual health conference and virtual pharmacist conferences in English and Spanish, a staffed lupus helpline and administrative support for the Bay Area chapters.
“Seeing what patients go through and seeing how dedicated the very small staffs here has completely changed my view on why you get up and go to work,” said Thomas Bakewell, who joined the foundation as its executive director this year after a long career in information technology. It was a very personal move for him, too: His late mother had lupus, and his oldest daughter also has been diagnosed with it.
Because lupus is often misdiagnosed and different types of lupus can overlap, it’s difficult to know how many people have the disease. The Lupus Foundation of America estimates that 1.5 million people have a form of lupus; the Centers for Disease Control say approximately 200,000 people live with systemic lupus erythematosus (SLE), the most common form. It can affect anyone, but it appears to be more common in women — especially those in child-bearing years.
The foundation offers free services including a buddy program, pairing up existing patients with someone who was recently diagnosed as well as videos, books and digital materials on services and how to live as close to a normal life as possible with lupus — not just for patients, but for family members, too. More than 200 people participated in the 29th annual Outrun Lupus run in September at Campbell Park, where Jane Siebenmorgen was the event’s honoree and shared her story.
“The amount of courage she has is remarkable,” Bakewell said. “At the Lupus Foundation, we are truly privileged to support people like Jane.”
THE WISH BOOK SERIES
Wish Book is a 501(c)(3) nonprofit organization operated by The Mercury News. Since 1983, Wish Book has been producing series of stories during the holiday season that highlight the wishes of those in need and invite readers to help fulfill them.
WISH
Donations can help the Lupus Foundation of Northern California offer services and programs including virtual health conference and virtual pharmacist conferences in English and Spanish, a staffed lupus helpline and administrative support for the Bay Area chapters. Goal: $5,000
HOW TO GIVE
Donate at wishbook.mercurynews.com/donate or mail in this form.
ONLINE EXTRA
Read other Wish Book stories, view photos and video at wishbook.mercurynews.com.