Living with Psoriasis

From ostracized child to empowered adult: A lifelong psoriasis sufferer finds relief

Diane Talbert, 52, Temple Hills, Md.

Childhood Traumas

Diane Talbert’s lifelong battle with psoriasis began in 1963, when she was just 5 years old -- a little girl entering the classroom on her first day of school with unsightly scales covering 90 percent of her body. The teacher, fearing that Talbert might be contagious, wouldn’t let her in. Instead, the child was sent to a hospital where her head was shaved and she was quarantined for three months while doctors tried to figure out what was wrong with her. Even after she was diagnosed, she suffered greatly. “In high school I refused to go to gym because it meant exposing my arms and legs,” she recalls. “Kids laughed, pointed and made fun of me. I had few friends and no boyfriends. I grew up in Virginia, a warm climate, and I never once wore shorts or short-sleeve shirts.”

Treatment-wise, Talbert suffered through smelly tar medications, and underwent light therapy that required she take a drug called psoralen, which made her skin more sensitive to the light therapy, but also made her nauseous. Neither approach was very successful, and as Talbert reached adulthood, she also experienced such painful psoriatic arthritis that she was sometimes unable to walk and had to learn to give herself injections of anti-inflammatory medications. Today, of course, doctors have a better understanding of psoriasis and more effective, compassionate ways to deal with it, but Talbert has been able to reap the benefits of this progress only in the past seven years or so. “Throughout my childhood, I never had a remission. I never even knew psoriasis could go into remission,” she says.

Staying Optimistic

“Many dermatologists have said that I had the worst case of psoriasis they had ever seen,” says Talbert. “However, I’ve always tried to maintain a positive attitude and focus on what I could try next, what new medications were available.” It was that positive attitude that attracted her now-husband, Alvin, when they first met at a party. Despite the scales all over her body, Talbert’s face was clear, and she and Alvin spent their first date talking about psoriasis. “I wanted to make sure he understood what it was, because he had never heard of it before,” Talbert recalls. “Once I explained it to him, he didn’t see the psoriasis anymore. He just saw me, and he told me from the first time we met he knew we were going to be married.”

Now a mom of two grown sons and a grandmother of six, Talbert says she has been able to use her life experiences to teach compassion to her own kids and grandchildren. “I’ve always said to them, ‘Don’t ever talk negatively about anyone. You never want to hurt someone else’s feelings,’” says Talbert.

Relief at Last

In 2003, when Talbert was 45, her dermatologist suggested she participate in a study of a new kind of “biologic” drug that was being tested for psoriasis called efalizumab (Raptiva). (“Biologic” means the drug uses a part of a living organism.) Within a few weeks, more than 80 percent of Talbert’s skin was clear. “It was awesome,” she says. “I ran out and bought shorts and short-sleeve blouses and sheer pantyhose for the first time in my life. I went to the beach. I sent emails every day to the National Psoriasis Foundation about my new experiences with clear skin. It was just amazing.” Twelve weeks later, the study ended. Talbert was taken off Raptiva “cold turkey,” and her skin rebounded in the most severe way possible -- she developed a life-threatening condition called erythrodermic psoriasis. Initially, Talbert was put on cancer medications and then light therapy to keep her psoriasis in check. Three months after that, her doctor prescribed another biologic drug, etanercept (Enbrel), which cleared her psoriasis almost completely. For the past two years, Talbert has been on adalimumab (Humira), and now she has severe psoriasis only on her legs.

“I have never had any bad side effects from biologic medications,” says Talbert. “My only problem is that they seem to stop working after a while, and so I need to try a different one.” In addition to Humira, Talbert applies a vitamin D/steroidal cream (Taclonex), baby oil and petroleum jelly to her skin to keep it soft and well lubricated; she also uses a tar-based shampoo to control her scalp psoriasis. Despite all that she’s been through, Talbert looks at her disease as something of a gift. “I’ve been places I never would have been and met people I never would have met otherwise,” she says. “I’ve spoken at town meetings and city hall, and once a year I go to Capitol Hill and speak in front of Congress in my role as a psoriasis advocate. I’ve met famous people and senators. I run a psoriasis support group, and I’ve organized and done fundraising walks. I’ve discovered strengths I would never have known I had if I hadn’t had this disease. Every time I talk about psoriasis, another door opens.”

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