Psoriasis documentary conveys message through personal experience
From January/February 2006 Psoriasis Advance
"It all started with a small patch of dry, flaky skin on my scalp." Thus begins Fred Finkelstein's experience with psoriasis—and his recently released film, "My Skin's on Fire: Living with Psoriasis."
Diagnosed with psoriasis in 1974 and with psoriatic arthritis in 1976, Fred Finkelstein
of Oakland, Calif., first experimented with videotaping his personal psoriasis story in 1978, but
health problems kept him from pursuing the project. Twenty-four years later, he became interested
in exploring the emotional aspects of psoriasis and went in search of documentaries on the topic, only to find that there were none. In 2002, he dedicated himself to making a film that would tell the world what it's like to live with psoriasis and psoriatic arthritis.
The film combines Finkelstein's personal story with interviews and sequences that explore the
diseases' physical, emotional and social impact. He examines the range of treatments available,
depression and coping, the power of support groups and relationships, and the future of treatment and research.
We spoke with Finkelstein about his experience and how he came to make the first known documentary about psoriasis and psoriatic arthritis.
What was your goal when you started this movie?
My intention was two-fold. First, I wanted to validate the concerns of those of us with psoriasis and psoriatic arthritis, to reinforce how serious the disease is. People with psoriasis have lived for years without hope.
Secondly, I hope people who don't have the illness will see the film and realize how little they knew about this disease. People just don't have the information. Knowledge is power and the opposite is true … We're all fearful of what we don't know.
I also wanted not just to talk about psoriasis but to depict it—I serve that role in the film, to take viewers into the interior [of this experience]. My approach was to take people on a little journey where you don't know what's going to happen at the end—much like this illness and life itself.
What were some of the challenges you faced?
Finkelstein with Dr. Mark Lebwohl, chairman of the Psoriasis
Foundation Medical Board
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The biggest challenge was really pushing through my own resistance. By that I mean deciding how vulnerable to make myself … I wasn't sure how much of my own story to share. I knew it was in part my story, but also other people's stories. On some level, the people in the film are also part of me; they say things that I don't have to say, but which are true for both me and them.
I worked to raise money for the film for over a year, approaching various sources, including pharmaceutical companies. Genentech [maker of the biologic medication Raptiva] stepped forward and that made it easier, obviously. With their support, I was able to focus on the film.
Another challenge was playing a dual role as a person with psoriasis and as a filmmaker, trying to reach others with psoriasis as well as those who know nothing about the disease. In order to work with this challenge, I chose an editor who knew nothing about the illness. He was a
great help in going through about 50 hours of material, which we cut down to a one-hour film.
Was it difficult to find your interview subjects and get them to talk about their disease in
such a personal way?
Finding people was the easiest part. Very few of the people I asked declined to be interviewed. I
started locally with a nucleus of people in the San Francisco Bay area who were part of a psoriasis support group about 10 years ago. Through them, I connected with the newer affiliated support group.
I had met the group's leader, Jody Kim-Eng, at the National Psoriasis Foundation® 2004 National Conference, where I interviewed a number of people for the film.
I knew I wanted to deal with the all-important emotional support aspect of psoriasis. The support groups fulfill that role for the greater psoriasis community at the local level.
What kind of response have you received?
People are reacting positively. People are struck by the film's honesty and the fact that it doesn't pull any punches in terms of the burden of the disease. A number of people who know me but don't know much about psoriasis have seen the film and been impacted and sensitized to the severity of this illness.
As of November 2005, I've entered "My Skin's on Fire" into a number of film festivals. I'm hoping that people who know nothing about psoriasis will respond with interest and openness.
The film ends on an optimistic note. Do you see a cure on the horizon?
I'm far from being a scientist, but based on what I've learned through this project, I definitely think we're moving in the right direction. The National Psoriasis Foundation is supporting research to build on Dr. Anne Bowcock's work, identifying more genes and exploring the genetic basis of the disease. I included that material in the film because I think it points the way to finding a cure.
Did any topics arise during the shoot that you'd like to explore further?
I'm very interested in the mind-body connection. As a study cited in the film found, a group of
people who used meditation with light therapy cleared four times faster than the group that didn't meditate. I'm fascinated by the power of the mind to impact healing and set the stage for nothing less than a miracle.
I'd also like to explore the ideas behind pharmacogenomics.* The more information we
have about our own DNA, the better we can tailor our treatments.
How would you summarize the film's message?
The message is personal power through acceptance. We all learn to take responsibility for our illness and find the resources we need—and they are out there. The illness can force you into isolation and depression, but the challenge is to learn how to take care of yourself and accept that you have a chronic disease.
*Pharmacogenomics is the study of how an individual's genetic
makeup affects the body's response to drugs.
Editor's note: You can receive a free DVD of "My Skin's on Fire,"
sponsored in part by Genentech, by completing an online survey
at the educational Web site www.beyondpsoriasis.org
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