Heather's Story - Psoriasis Cure Now Patient Calendar August 2008

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Heather's Story - Treatment turns teen's school days around (and makes mom happy too)

Heather, 13, is tall, blond, and beautiful, and--until last summer, when a new medication brought her almost complete relief--she was covered with severe psoriasis. She developed psoriasis in kindergarten, and it got really bad three years ago, says her mother, Suzanne. At an age when kids often judge each other harshly, Heather was an easy target because of her psoriasis. Kids at her school teased her mercilessly, saying she had a "disease" or that she had "warts." They said she was contagious and refused to sit near her. She often came home from school crying. Suzanne went to Heather's school numerous times to explain what psoriasis is and to reassure everyone that it is not contagious. "The lack of education is the sad part," she says. Heather and Suzanne, who have, respectively, psoriasis and psoriatic arthritis

Heather and Suzanne, who have, respectively, psoriasis and psoriatic arthritis

Suzanne understands firsthand how frustrating and debilitating psoriasis can be. She suffers from psoriatic arthritis, which has forced her to give up athletic activities she enjoys. However, because she does not have any visible sign of the disease on her skin, she is spared the public comments that her daughter must endure. "My joints ache, but nobody would know unless I told them," she says. "With Heather, everyone knows without her saying anything. I can't imagine what she goes through." Suzanne sees a rheumatologist for treatment, but she hasn't yet tried the medication that has made such a difference for Heather.

It was a little scary when Heather started the new biologic medication, says Suzanne. Biologics for psoriasis have only become available in recent years, and are not often used in children. Heather had to have a lot of preliminary tests. However, the results have been amazing. Heather went from having around 80 patches of psoriasis to having just a few here and there. The teasing has diminished significantly. Now, someone will comment on Heather's psoriasis maybe once a week. When Heather returned to school last fall, a couple of months after starting the medication, one of her regular tormenters was shocked. "What happened to all your skin problems?" the person asked. Heather replied, "They went away. Now what are you going to tease me about?"

Now confident enough to wear shorts, Heather joined her school’s volleyball team, and she is even doing some modeling. Suzanne, a former model herself, is careful to protect Heather from the harsher aspects of the modeling business. They work only with a few selected photographers that Suzanne knows and trusts.

Heather’s experience has had other positive effects. Because the medication she takes can weaken the immune system, her whole family has adopted healthier habits to help keep her well. They eat better and exercise regularly. “Often you don’t take as good care of yourself as you do your kids,” says Suzanne, “but this has been a complete change of lifestyle.”

Suzanne has gotten involved in a local psoriasis support group. She visits dermatologists’ offices and talks to them about what psoriasis is like from a patient’s point of view. She also does what she can to raise public awareness about psoriasis, including volunteering for the Psoriasis Cure Now calendar. And Heather, says Suzanne, has learned a valuable lesson—that it is so important to overlook “imperfections” and see people for who they truly are.

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Write to Congress about psoriasis research. And find resources for children with psoriasis, and their parents.