Jennifer's Story - Psoriasis Cure Now Patient Calendar June 2008

JAN | FEB | MAR | APR
MAY | JUN | JUL | AUG
SEP | OCT | NOV | DEC

OUR SPONSORS

Jennifer's Story - "I've been itchy since the 1970's"

Jennifer’s attitude about her psoriasis has changed a lot over the years. Diagnosed when she was in the first grade, she spent her childhood and teenage years trying to avoid even saying the word ‘psoriasis.’ If someone asked her what was wrong with her skin, she would act surprised. “Oh that?” she would say. “I don’t know. I must be allergic to my new soap.” She kept her skin covered, wearing long pants and long-sleeved shirts all summer. Upon learning that people living in desert climates wore light colors to protect themselves from the heat, she decided to wear white clothes whenever possible. “It always looked like we were going on vacation with a professional fencer,” she recalls. Jennifer, who has psoriasis

Now in her 30’s, Jennifer, a writer and actress in Los Angeles, doesn’t want to stop talking about psoriasis. She recently wrote and performed a one-woman show called “Memoirs of a Flaker,” a humorous look at her never-ending struggle to find relief from her itchy, scaly skin. In the show, she describes her experiences with a long list of conventional and alternative treatments, all of which emptied her wallet while leaving her psoriasis essentially unchanged. ‘Memoirs’ ran for eight months and got good reviews. It was a personal tale with a broader message. “I think everyone has something about themselves that they want to change. Well, psoriasis is mine,” says Jennifer. “In ‘Memoirs’ I tried to get people to think about how far they would go to change that thing.”

Currently, Jennifer is working on a loosely autobiographical collection of short stories called “The Flake,” which features psoriasis as a recurring theme. Jennifer was also a Finalist and prize winner in the 2007 Psoriasis Cure Now Video Contest [click here to see her winning video and the other winners], and then, of course, a volunteer for this calendar. “The only way that we’re going to get funding to do research to make psoriasis go away is by getting it out there,” she says. “The more we talk about it, the closer we get to an answer.”

Jennifer has an alphabetical list of the alternative psoriasis treatments she has tried. Acupressure, acupuncture, cleansing, colonics... fasting, homeopathy, hypnosis..., it reads in part. None of them helped her psoriasis for long, but they did provide her with good material for ‘Memoirs.’ “I went to a Chinese medicine lady who told me my insides were wet, which I kind of figured they would be. Isn’t there blood in there?” she jokes.

After years of trying almost everything, Jennifer has found a measure of relief from some simple things—a healthy diet, lots of exercise, plenty of sleep, yoga to reduce stress. A week in the sun in Hawaii did wonders, too, she says. When she absolutely has to--for example, when her skin needs to be clear for an acting job--Jennifer uses a steroid cream. She tries to avoid it, though, because it is very expensive and as soon as she stops using it, her psoriasis flares badly. She has health insurance, but it won’t pay for treatment because her psoriasis is considered a pre-existing condition. In college, she charged thousands of dollars worth of medication to her credit cards, which she has yet to pay off. She affectionately refers to the balance as her “psoriasis debt.”

Psoriasis has complicated Jennifer’s acting career. When she was starting out, she didn’t want to tell agents that she had psoriasis; on the other hand, she couldn’t take any jobs that required her to expose her skin. She told commercial agents that she didn’t do any bathing suit or lingerie work, but she didn’t tell them why. “They just thought I was incredibly modest,” she says. Now that she is established, the pressure to hide her condition has eased, but psoriasis does still sometimes cause unexpected problems. Once, when she was shooting an episode of the AMC TV series “Mad Men,” she had a bad reaction to the flame retardant chemicals in her costume. “My psoriasis started to swell up before my eyes. I was in so much pain,” she says. “I was thinking, ‘This is it. This is when I’m finally going to get fired over this stupid skin thing.’” In the end, she made it through the 16-hour day and didn’t get fired. But because it was a holiday weekend, she couldn’t get an appointment with her dermatologist. Instead, she went home and covered her skin with plain yogurt to reduce the swelling. The upside? “My dog loved it,” she says.

On an emotional level, psoriasis doesn’t affect Jennifer as much as it did when she was younger. She has gotten more comfortable in her skin as she has matured. Even so, she is still searching for and hoping for a cure. “It’s a really annoying, frustrating disease,” she says. “I’ve been itchy since the 1970’s.” But she remains optimistic: “We can figure it out,” she says. “I know we are getting close.”

###

Write to Congress about psoriasis research. And check out our 2008 Psoriasis Cure Now Video Contest.