A hostage to a disease he couldn't control, Fred Finkelstein spent many years hidden from others.
He could have ventured outdoors, he said, but he didn't want to deal with people seeing his reddened and scaly skin, inflamed by the disease psoriasis.
"People judge us on the basis of our skin -- our whole culture is based on cosmetics, lotions, creams and all that," said Finkelstein, of Oakland, Calif. "With (psoriasis), there's a whole layer of psychosocial problems, feelings of embarrassment, of shame, of ultimately feeling isolated."
But these days, Finkelstein, a filmmaker, has cast off the shy persona and is sharing his story with a new documentary, "My Skin's on Fire: Living With Psoriasis." DVDs of the film can be ordered for free at www.beyondpsoriasis.com.
He said now is an ideal time to shed light on the skin disease that affects more than 5 million people because, thanks to new medications, it's no longer a disease that needs to remain hopelessly hidden.
Rather than treating the disease topically, a new class of drugs known as "biologics" and "immuno-supressants" target the internal cause -- an immune system on overdrive, which leads to the visible pile-up of inflamed skin cells. Inflammation normally protects the body, but too much of it is harmful.
"Here, really in the last 2 to 3 years, they've changed the disease of psoriasis. For many years it was considered an inflammatory skin disease. Now it's known as an 'immune-mediated disease,'" he says. "They've been able to pinpoint some of the mechanisms that misfire in the immune system."
But as Finkelstein's film shows, living with psoriasis is often far more than just a bothersome condition. Its obvious symptoms -- flaky, red skin -- can be a tremendous mental burden as well.
In the film, Finkelstein follows the typical trajectory of dealing with psoriasis. First, small patches of flaky skin crop up, usually when a person is a young adult. Then comes the diagnosis of psoriasis. The person may feel confused, wondering where they got such a disease, but a bit of questioning often reveals that it runs in the family -- a trait kept hidden from most family members. Then, the person goes through a long trial of different treatments, many of which don't work.
Thankfully, that last step has been shortened by the advent of biologic drugs, said Dr. Alan Menter, a clinical professor of dermatology at the University of Texas Southwestern Medical School in Dallas and founder of the International Psoriasis Council.
Menter, who was interviewed for Finkelstein's film, said it accurately portrays the emotional burden of the disease.
For example, when patients first come to him for medical help, they often are overweight and depressed, Menter said. Most newly-diagnosed patients are young adults.
"For example, you take a 25-year-old, standing in the mirror seeing these crusted patches all over his or her body. They're trying to go out and get a date and it's crushing. They can hide it with clothing but that can't hide it from themselves or when they relationship starts becoming intimate," he said.
But Menter and Finkelstein are both optimistic that this will be less of a problem in the coming years, as more people are treated with medicines that truly help quell the disease.
"Right now I think there are something like 40 new drugs," Finkelstein said. "The future looks very bright for all of us who have suffered for so many years. I think it's a very good time to be talking about psoriasis."