Diagnosed with psoriatic arthritis and psoriasis over 45 years ago, I was on my own, not knowing anyone else with the disease. Maybe because psoriasis is highly visible with unsightly plaques, people literally “cover up” and treat it as a secret not to be discussed. I only saw other patients with psoriasis in my dermatologist’s office, especially at a phototherapy center. I learned that psoriasis could lead to social isolation, an unwillingness to let others in. Over time, I cultivated connectivity with other patients, one of my proudest contributions to the community.
For me, reaching out to psoriatic patients began in 2003, when I answered a notice posted in the National Psoriasis Foundation (NPF) newsletter for a position on the Foundation Board. This appointment marked the beginning of my advocacy and a commitment to helping others overcome hurdles, and in general, live a better life. Over 16 years on the board, I have met many patients at board meetings, local support groups, local and regional education conferences, advocacy, and fundraising events.
I frequently volunteer to speak at in-person conferences (pre-pandemic) and on Zoom conference calls. Other patients and foundation staff regularly refer patients to me for one-on-one talks and nonmedical advice. After clarifying that I am not a physician, I address their specific questions regarding insurance, preferred health care professionals, and treatments. I believe that they are less lonely and overwhelmed as a result. I guide them to reliable, neutral websites, like NPF, Mayo Clinic, NIAMS, WebMD; and steer them away from sources of misinformation on the Web.
I have found trips to the U.S. Capitol and Sacramento, my state capital, with fellow psoriasis patients valuable and enjoyable. During our preparation and presentations, I learn the personal disease experiences of other patients. This has caused me to appreciate how valuable it is to have access to quality health insurance, specialist physicians, and how to be your own best advocate. I have converted nervous first-time advocates into effective spokespeople for our community.
I try to be an informal mentor to as many patients as I can, to have answers and be available to those in need; to educate as best I can. I usually provide them with options rather than any specific medical recommendations, although I am open to speaking about my own experiences. I like to think that my own experiences with psoriasis make me an approachable and good role model.
A number of years ago, I was directed to a Walk team website entry from a teenager in the Southwest who had psoriatic arthritis and was seeking supporters. She was not atypical of young people I had met – a girl in pain, having experienced shunning from former friends, a girl wanting to come out of her protective shell and help others. I contributed to her Walk team, connected with her mother who I helped to navigate the health care system, and provided her with useful information, advice, coping mechanisms, and positive ways forward. I am proud to say that the daughter has served on several foundation panels, bravely stood and addressed members of Congress, and has conducted research in biology at her university. This turned into a meaningful relationship and mentorship for the three of us, a study in patient progress and what connectivity among the psoriatic community can achieve.
Several years ago, I attended an NPF bingo event. While standing by my table, I noticed a woman approaching me from across the room, arms wide. She gave me a big hug and explained that I had recommended a dermatologist in her HMO who had prescribed a biologic and that, clear for the first time, she exclaimed, “You saved my life!”
Making positive connections with other psoriatic patients is well worth it, completely gratifying and uplifting, and definitely the right path for me.
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