Flaky, painful skin. Joint soreness and deformities. Social embarrassment. Not only has Fred Finkelstein, a filmmaker with longstanding psoriasis and psoriatic arthritis, lived through these experiences, he also knows the devastating impact that psoriatic disease can have on others. He has made two documentaries, My Skin’s on Fire and I’m Just Like You, that portray the physical and emotional toll of psoriatic disease on the lives of affected adults and children.
“Living with psoriasis and psoriatic arthritis has been the most challenging event of my 70-plus years of life and helped motivate me to make these films,” says Finkelstein.
“Imagine having to cope with a skin condition that covers your body from head to toe, itches at any time in any place, and literally makes it impossible to feel comfortable in your own skin, not to mention making one feel unpresentable to a potential love interest and peers. Then add painful, inflamed joints that burn and produce a constant achiness and make it impossible to walk normally, reach for dishes on a shelf, or make your bed. Forget about riding a bike or playing tennis. The result is a quality of life that is severely diminished.”
Finkelstein is enthusiastic about the possibility of a cure for psoriatic disease one day. “A cure or magic bullet would mean an end to the physical and emotional pain and all of the additional baggage that comes with psoriatic disease,” he says.
Is a cure possible? Finkelstein’s skin has significantly improved with an injectable biologic medication, but his deformed, stiff joints still hinder him. Over the past decade, 12 new injectable or oral medications have been approved by the U.S. Food and Drug Administration for the treatment of psoriasis or psoriatic arthritis, giving individuals new options and new hope. Some of these medications can have a remarkable effect, clearing 100 percent of the skin in around half of psoriasis patients who start and stay on therapy.
Still, significant obstacles remain. Psoriatic arthritis responds less well to these medications, the drugs can be expensive, and people can stop responding to medications that previously worked well.
Mapping the future of psoriatic disease
Despite these challenges, physicians and scientists working with the National Psoriasis Foundation (NPF) are excited to launch a new effort to define the steps needed to reach a cure for psoriasis and psoriatic arthritis. On May 30 and 31, 2019, in Seattle, NPF will host its inaugural Cure Symposium meeting: “The Future of Psoriatic Disease: Prevention, Precision Medicine and Cure.” The meeting will gather leading dermatologists, rheumatologists, scientists, industry representatives and patients to discuss the latest advances in psoriatic disease research and discuss the path forward to a cure.
“In the past several years, there have been so many advances in the treatment of psoriatic disease, but more can be done,” says Stacie Bell, Ph.D., NPF vice president of research. “We are excited to host this important symposium for the collaboration of key members of the community to continue our mission of driving efforts toward a cure, while improving the lives of those impacted by psoriatic disease.”
The Cure Symposium will provide a forum for experts in psoriatic disease research and clinical care to discuss results from ongoing research and educate participants on cutting-edge topics. The symposium will foster collaboration across disciplines and host discussions on how to move the field forward while making the best use of NPF’s resources.
Interestingly, several people with psoriasis have experienced an apparent cure of their psoriasis after replacement of their immune system with a bone marrow transplant received for other medical reasons. While such a procedure is too risky for treating psoriasis alone, it provides a proof-of-concept that eliminating psoriasis-associated immune cells can lead to a cure.
Ultimately, a cure for psoriatic disease would mean no risk of comorbid conditions, no creams, pills, or injections to remember, and the freedom to engage freely in physical activities while enjoying the things most of us take for granted, such as wearing shorts and swimming without uncomfortable stares. Finkelstein agrees: “If the heavy burden of psoriasis and psoriatic arthritis could be lifted, we would be free to focus on those elements of living that seem blocked in so many ways to so many of us now.”
There's still time to register for the Cure Symposium. We hope to see you there.
Photo: Fred Finkelstein by Pad McLaughlin
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.