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Lisette Hilton is president of Words Come Alive, based in Boca Raton, Florida.
Mr. Finkelstein and others talk about how it feels to be stared at and avoided. One man tells a story of getting into a pool and seeing everyone else get out.
But that awareness only scratches the surface, these patients say - and largely ignores the deep emotional and psychosocial impacts of the disease.
Recognized by the American Academy of Dermatology with the 2006 Gold Triangle Award, the film "My Skin's on Fire: Living With Psoriasis" documents how patients grapple mentally with the disease's physical manifestations and resulting social scrutiny. It delves into their frustrations with imperfect, and often dangerous, treatments and illustrates their hope as options improve.
An independent filmmaker, Mr. Finkelstein has long wanted to tell the story of psoriasis in a way that no textbook could.
"Life gives you lemons and you try to make lemonade," he tells Dermatology Times. "I wanted to create a document that spoke honestly to the greater psoriasis community about how deeply challenging this illness can be."
Film chronicles ignorance
The 60-minute documentary, released in early 2006 and subsidized in part by Genentech, paints a picture on several fronts.
Patients from all walks of life tell their stories, while dermatologists fill in some of the blanks. The film tackles the many myths about the disease - from the belief that is only an itchy annoyance to the mistaken belief that it is deadly and contagious.
The documentary illustrates that society knows little about psoriasis, as demonstrated by random interviews on the street: One person said psoriasis had something to do with cirrhosis of the liver.
Mr. Finkelstein and others talk about how it feels to be stared at and avoided. One man tells a story of getting into a pool and seeing everyone else get out. Interviewees talk about troubles dating; very often, psoriasis sufferers become isolated, left to endure the pain and other symptoms of psoriasis and psoriatic arthritis alone.
Many of those interviewed during the 50 hours of filming had psoriasis through the 1970s, '80s and '90s, when treatments were limited to those that made compliance highly labor intensive and messy, such as coal tar, and to ultraviolet light and dangerous medications, including methotrexate and cyclosporine.
Interviewees talk about how the side effects of treatments and exposure to sunlight have come back to haunt them in the form of skin cancer and more.
Genesis in 1970s
Mr. Finkelstein started filming for the project in the late 1970s, when he sought an alternative treatment in Mexico.
He was hoping to film a cure, but instead fell ill and abandoned the thought of doing such a film until the summer of 2002. It was at that time that he approached Gail Zimmerman, president and CEO of the National Psoriasis Foundation, asking if anything existed that would help doctors, patients and loved ones learn about the struggles that psoriasis patients face.
"Gail said there was nothing," Mr. Finkelstein says.
Mr. Finkelstein wrote a grant, secured funding and started filming, interviewing primarily people in the San Francisco Bay area, but adding footage from Washington on Capitol Hill Day, an annual event that brings members of the National Psoriasis Foundation to meet with their legislators on the Hill.
There is an arc to the film's storyline, from desperation to modern-day hope.
"The film really is geared to people with moderate-to-severe illness (which represents at least a third of all psoriasis patients)," Mr. Finkelstein says. "Lack of knowledge often creates fear and misunderstanding."