Lemke shares her story about Lupus

Linda Saholt

News Review Correspondent

Lemke shares her story about LupusWhat do you know about lupus erythematosus? This chronic autoimmune disease can damage any part of the body, including the joints.

“Your own immune system creates antibodies that attack your own healthy tissue,” said Michelle Lemke, who holds a master’s in health administration and is a certified professional in healthcare risk management.

She works at Ridgecrest Regional Hospital — and has lupus herself. That made her the perfect expert to speak about lupus to the Ridgecrest Exchange Club during May — Lupus Awareness Month.

According to Lemke, 1.5 million Americans have been diagnosed with lupus, and more than 16,000 new cases are reported annually. Ninety percent of these are women, especially of childbearing age. Women of color are two to three times more likely to develop lupus than are white women.

“It is not contagious and is not believed to be hereditary,” said Lemke. The cause is still unknown.

Lupus is a condition characterized by flares and remissions. The flares can be mild to life-threatening. Lemke said her symptoms are usually joint problems. That day she was wearing heels. “Today is a good day,” she explained. On a bad day, she is able to walk only if she wears sneakers.

There are two types of lupus, systemic and cutaneous lupus.

Systemic lupus affects multiple organ systems, with inflammation the most common symptom. Someone with this type of lupus is likely to suffer extreme fatigue, sun sensitivity, anemia, hair loss and so on. The flare pattern is irregular, so planning ahead becomes problematic.

The more common cutaneous lupus is also called “skin lupus” or discoid lupus. Affecting mostly the skin, this lupus shows up as a red, scaly rash that is not itchy, a butterfly rash across the nose, changes in skin pigment and hair loss. About 10 percent of sufferers have both kinds.

Lemke has systemic lupus. “It never goes away. You just always have it,” she said.

Living with lupus involves using sun protection; coping with pain, depression and susceptibility to infection; fatigue management and memory loss, or what Lemke called “lupus fog.”

It always hurts a little bit. It’s about degree. I’m lucky I have a very strong support system. My husband goes to all my doctor appointments with me and understands,” she said.

“It’s a disease that’s not obvious. I don’t look sick. There’s no exact test for lupus. My symptoms mimic rheumatoid arthritis, so I go to a rheumatologist at UCLA.”

Lupus can kill, but rarely, and only if it attacks the kidneys. There are lots of theories about the disease and how to treat it.

“Eat healthy,” Lemke advised. “Exercise is tricky due to joint pain. Swimming works quite well for me — I can’t run or jump.

“You can still have children if you have lupus, but you would have to be off all medications during pregnancy, which would be very difficult. Fortunately, I was done having children at the time I was diagnosed.

“Also the medications are expensive. I’m very lucky I have good insurance. Everything about lupus is expensive — not just the meds, but the trips to UCLA as well. In the beginning, they try you out on all sorts of meds, and there are lots of side effects. They can’t just take you off a drug, they have to taper you off.”

Some of the frustrations she described included the extreme fatigue for no apparent reason while looking fine on the outside and the unpredictable flare-ups.

“Being able to talk to someone who knows about this and verbalize the frustration is very important,” she said.

For more information about lupus, see the Lupus Foundation of America, which can be reached through www.lupus.org, www.lupuswi.org or www.lupusresearch.org.

Story First Published: 2013-06-19