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Expert Panel:  Psoriasis for College Students
Can Be a Real Heartbreak

 by Lise Stevens
March 2006

Psoriasis is a challenging disease for anyone who has it — not only does it entail itchy, scaly skin; painful swelling, and in some cases, the added insult of psoriatic arthritis — but the social impact of dealing with public reaction to the characteristic red and scaly skin can be devastating. Add to this the insecurity, self-scrutiny, trying to fit in and general stress of college students with busy schedules, and you have a veritable recipe for disaster. Strangers and peers alike may draw away, stare, ask rude and inappropriate questions, and even completely avoid a fellow collegian, adding to the overall pressures of growing up. Students with psoriasis may hide, avoid social situations and silently suffer not only the effects of the disease, but growing isolation and insecurity.

There are steps college students can take to manage their disease, according to speakers at a media event, “Coming to Terms With Psoriasis: College Students Speak Out!”

The panel of speakers, convened in conjunction with the 2006 American Academy of Dermatology meeting in San Francisco, was aimed at addressing this difficult issue by gathering speakers from colleges, patient organizations, dermatology, the pharmaceutical industry and self-help industries. The session was moderated by award-winning journalist Robert J. Geline.

Student Stories

David Vartanian, a 20-year-old student at California State University, Fresno, traced his difficult road to coping with his psoriasis. He developed the disorder when he was 16 and went to a dermatologist. “The doctor had on this white gown, white gloves, goggles and she was acting like I had something contagious,” he remembered. “I became really proactive about what I had and how to treat it.” He contacted the National Psoriasis Foundation and promptly attended their next conference. “That was a really big turning point in my life because I met other people who had psoriasis,” David said. “And I found out I could have a light box [for ultraviolet therapy] right in my home.”

Finding out that he had psoriasis soon before transitioning to college was another challenge, David said. He got a job at a clothing chain and had frequent, painful outbreaks on his face and legs while on the job. “You can imagine, I’m this 18-year-old guy, I’m going to college, and then I’m going to work and it was really embarrassing,” he said. “I had psoriasis all over my legs and on my face; it was very painful and really hard. I put on makeup my dermatologist gave me, and people around me were so negative.” The manager would have him work stocking items, out of sight, when he was broken out. The emotional toll was too great, and he ended up quitting his job. “I couldn’t surround myself with people who were negative, I needed to be around people who were positive,” he said. “There are so many people in this world, I don’t have to be around people who are negative and don’t like that I have psoriasis. If people aren’t friendly, I move on.” He added that the support of his family has been especially important in helping him deal with the everyday difficulties of his psoriasis.

Another student, 21-year-old Sharma Kiesner from the University of Hartford, was diagnosed at age 11 with psoriasis.  She also has associated psoriatic arthritis, which makes her stiff and ache. “I’ve been to hell and back,” she told the audience. She said the painful plaques on her feet and other parts of her skin made just getting dressed a chore. She didn’t swim in gym class, and felt her classmates withdrawing because they were afraid the disease was contagious. Treatment was also slow in coming. “I tried different topical and oral medications,” Sharma said, “and nothing helped. My doctor said I might grow out of it, but I didn’t.” She missed a year of school, but still graduated with honors.

Once she reached college, Sharma said, the difficulties continued. A worker at the student health clinic told her to take a year off and “get better” but she refused to do so. She found a dermatologist who recommended biologics for treating her psoriasis, and at last she found some improvement in her symptoms. She decided to “get out there,” as she puts it. “I joined the Programming Board, the Marketing Association so I would meet people and get my name out there, and let people know what it is. I want everyone in Hartford to know that psoriasis is not contagious.” She added that people have learned about her disorder and that it can’t be transmitted.

 “It has really been a rough struggle; I’m still seeing a lot of doctors and the pain is still something I’m adjusting to,” Sharma said. She explained that her medications can cause her to be tired, depressed and anxious. Still, she’s determined not to let the disorder get her down. “I have psoriasis, but psoriasis doesn’t have me,” she concluded.

David Coleman, a relationship expert called “The Dating Doctor,” reminded the audience that David and Sharma are not typical students with psoriasis. “These two are the exception, not the norm,” Coleman said. “For every kid like these two, there are 20 to 50 kids who won’t go out if there is a social event; they won’t go to the recreation center because of the clothes they have to wear.” He added that the view of the general public about psoriasis is akin to what people with sexually transmitted diseases endured 10 or 15 years ago. “If someone says they have herpes, you know you can shake their hand. If you say you have psoriasis, they take a step back. The enemy for these kids is dealing with the ignorance of people on a college campus.”

Treating the Mind

Steven R. Feldman, M.D., Ph.D., Professor of Dermatology, Pathology and Public Health Science at Wake Forest University School of Medicine, stressed the importance of treating patients from a psychological as well as a clinical standpoint. “Helping people come to terms with some of the emotional issues surrounding psoriasis is an integral part of treatment. Studies show that compared to other physical illnesses, psoriasis has a huge impact on people emotionally.” Dermatologists, Dr. Feldman says, are very good at diagnosing skin disorders quickly and prescribing treatment, but he suggests a different approach. “I keep my prescription pad in my pocket,” Dr. Feldman said. “I touch their plaques and say, ‘Wow, these are really thick’ so they know they’ve had a thorough examination.” He added that especially in the presence of parents, he will touch the patient’s lesions and then his own skin to bring home the message that psoriasis is not contagious. He encourages his patients to join the National Psoriasis Foundation (NFP) so they can meet and trade stories with other people with psoriasis and be empowered.

Gail M. Zimmerman, President and Chief Executive Officer of the NPF, said depression is a major component of psoriasis in college students.  “Psoriasis is a disease that you can hide, and people go through the day covering it up and feeling ashamed. They become withdrawn; in one survey 40% of college students with psoriasis decided not to participate in recreational events, not to go to the gym, not to date,” Zimmerman said. “We view this as an over-arching depression.”

Treating the Body

When asked about the best treatment for psoriasis, the panelists agreed that patients must be treated on a case-by-case basis. “Deciding what people need depends on a risk-benefit analysis,” Dr. Feldman said. “Most patients don’t need a biologic, but for those who are do need one-‘Wow! What a difference they can make.” He added that physicians have to work with patients to find treatments that fit their lifestyles by using a topical treatment that is less messy, making ultraviolet light therapy accessible, and minimizing onerous travel to appointments and treatment sessions.

Patients complying with their treatment is also a major problem. Zimmerman said that sometimes physician-patient communication is flawed and patients don’t understand how to administer their treatment. Other times, she said, when they aren’t getting results, patients simply give up and stop using their medications.

Dr. Feldman points out that compliance is a problem in the general public even with simple medical disorders and treatments. “We learn in medical school that people don’t even take an antibiotic for a week when they have gonorrhea, let alone having to take medication for the rest of their lives, like these folks need to.” His method is to see patients in a follow-up visit early after diagnosis. “If your dentist says to floss every day, you won’t do it. If he tells you to floss every day and come back in a week, you’ll do it.”

Coleman compares compliance to a committed relationship. “There are people who would love to put as much time into a relationship as these two students have put into managing their psoriasis,” he quipped.

Sharma said sometimes finding the refrigeration needed for her biologics and sticking to her medication schedule is her challenge. David feels that getting a light box in his home is key to his ability to follow his treatments ultraviolet treatments faithfully.

Intimacy Issues

Intimacy is yet another issue people with psoriasis face. Whether it is the self-consciousness they feel about their plaques or the decision to share the fact of their illness, trust and self-esteem hang in the balance.

David says he’s had a girlfriend for over a year and a half.  He first told her about his psoriasis when she came over to his house and admired his “tanning bed.” He explained that it was a light box and what it was for. By sharing his story, he felt he was able to educate her and also got past the barrier of psoriasis. He said that he learned his lesson about sharing early. “When I went to my first Foundation conference, there was a case of a man who had psoriasis near his private parts. His wife, who didn’t know anything about psoriasis, thought he had been cheating and left him. It ruined his whole life.” He added, “If your partner is educated about it, it will avoid problems or questions later on. Be up front about it.”

Sharma explained that many people with psoriasis feel that people will break up with them or at the very least, think it is weird. “It’s personal, everyone deals with it in their own way.”

Coleman said there are three things people with psoriasis need to tell their partners: “I didn’t get it from somebody,” “You can’t get it from me,” “It can be painful.” He adds that being up front and honest about it is the only way to go. “A relationship that begins on deceptions will ultimately fail,” he warns.

The Future

The cure for psoriasis is not yet at researchers’ fingertips, but there are promising signs that treatment is advancing rapidly. Zimmerman noted that there are many new biologics being developed or actually on the market for both psoriasis and psoriatic arthritis. In addition, she said, genetic advances hold promise for future treatments and possibly a cure. Three genes to date have been identified as related to psoriasis. “We believe that if we can find the entire genetic component, this is the most direct route to developing therapies and even a cure.”

Zimmerman noted that new initiatives are also a component of advancing treatment. Because of the growing awareness of the special challenges college students with psoriasis face, the NPF is ramping up efforts to increase awareness and provide resources for affected collegians and the general public. “We want to reach out to young people,” Ms. Zimmerman said. She added that NPF will have more information about younger patients and psoriasis on their Web site and at conferences.

Dr. Feldman noted that patients wanting to know about and manage their disease is its own advance, remarking that at one symposia at the American Academy of Dermatology meeting, the room was filled with such people. Other advances, Dr. Feldman says, are creams that are less messy, more effective and easier to use; new types of ultraviolet light therapy and biologics used in other diseases that are under study and, in some cases, on the way to approval for treating psoriasis.

Hope

Zimmerman reminded the audience that, as evinced by the wicked symptoms of the disease, psoriasis is not to be trivialized. “To cope with it on a daily basis, people need to be informed, know what their options are and have resources that can help them to cope.”

Coleman noted that David and Sharma’s ability to be honest about their condition is vital to their successes. “They can tell people, I have psoriasis but that is not who I am.”

Dr. Feldman noted that the panel itself was one of the greatest advances in psoriasis. “This goes way beyond the medical issues,” he commented.

 “I’m tired of covering up my psoriasis,” David said. “This is who I am and if you don’t accept me, that’s fine. But spreading the word about my disease has allowed me to help others who have it. And then it gets passed on-those people help other people and so on. That’s what we want to do-educate people who have psoriasis and those who don’t.”

“I’d rather be up here telling people about it than just wishing they would change,” Sharma said. “I used to think psoriasis was my greatest weakness but now I know it is my greatest strength.”

*****

Lise Stevens is a freelance health and medical writer from New York City.

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