Personal social struggle with psoriasis.  Battling psoriasis on the social front.

 

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One woman's struggle (with psoriasis)

 

By Amanda Gardner HealthDay Reporter

 

(HealthDayNews) -- For Leslie Holsinger, psoriasis means having a disease that people can see yet not understand.

"people look at you and they know you have it. You can't do anything about this. You can't hide it," Holsinger says. "But it's even more than cosmetic. It can be very, very painful, not to mention itchy."

Holsinger, a molecular biologist who lives in Belmont, Calif., was diagnosed with psoriasis when she was just 18. It wasn't a huge surprise: Both her father and grandfather had the disease. At the time, her condition was classified as "moderate," meaning not particularly mild and not particularly severe.

This label was little consolation to a teenager.

"It's tough to have something so visible. You plan your life on how bad you think your psoriasis is going to be," remembers Holsinger, who is now chairwoman of the board of trustees of the National psoriasis Foundation.

"I took the approach of denying it," she adds, describing the condition that is characterized by an uncomfortable thickening of the skin with bright red patches and silvery scales. "I would tell people I burned my arm, I fell off my bike and it's a scab that won't heal. I would have to remember who I told which lie to, and I did that for many, many years."

Holsinger's psoriasis eased in her 20s, the time when she met the man who is now her husband. "Up until that time I hadn't dated a lot. I didn't want to tell people about it," she recalls. While she and her future husband were dating, Holsinger's psoriasis worsened.

During the next few years, Holsinger tried all kinds of treatments, starting with topical steroids and light therapy. The light therapy worked for a while but she had to go to a clinic almost every day. Fortunately, she was working at Stanford University at the time, which had a light therapy clinic only minutes from her office.

When she was 29, Holsinger became the first in her family to develop psoriatic arthritis, an inflammation that manifests itself in the joints rather than the skin. While psoriasis was difficult because people could see it, the arthritis was equally tough because people couldn't see it.

"It's hard to explain to people that you're a healthy 30-year-old and you're taking the elevator one floor. I got snide comments from my employers," she says. "I had to pull myself up stairs using the handrail."

As her condition deteriorated, Holsinger moved on to systemic medications including methotrexate, a chemotherapy drug. "Methotrexate does work but it has side effects, not the least of which it makes you feel really terrible, like you have the flu," she says. "Your joints don't hurt but you feel nauseous."

Holsinger stopped using methotrexate when she decided to get pregnant. Being pregnant turned out to be the best treatment of all.

"It was great. The first couple of months were rough because I couldn't take anything so my arthritis and psoriasis got pretty bad. You're immune-suppressed when you're pregnant and many women get significantly better. By two-and-a-half months, the psoriasis was almost completely gone and I couldn't tell I had arthritis. It was wonderful," she says.

But after Holsinger's son, now one-and-a-half, was born, the psoriasis and the arthritis came back with a vengeance. She went back on methotrexate to try to get things under control.

Right now, in anticipation of a second pregnancy, Holsinger isn't taking anything except topical creams for her psoriasis and Celebrex for her arthritis. The creams, she says, "keep it bearable but it's still painful, red and itchy." And if she misses one dose of Celebrex, "I have tremendous pain in my joints, difficulty going up stairs, difficulty opening up jars with my hands."

As soon as her second child is born, sometime in the next year or so, Holsinger plans to try as many of the new biologic therapies as are available. "I have a lot of hope for the future," she says.

 

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