An estimated 7.5 million people throughout the United States live with psoriasis, a chronic condition that causes cells to build rapidly on the surface of skin, creating scaly or red patches that can be itchy and painful. The disease can also lead to psoriatic arthritis, which causes stiffness and pain in and around the joints.
August 2017 is National Psoriasis Awareness Month, and from fun runs and conferences to fundraisers and volunteer events, there is no shortage of ways to get involved in this year’s efforts to raise psoriasis awareness. The National Psoriasis Foundation has even coined the term “Psoriatic Psuperhero” to highlight the power of individuals who participate in and promote these events.
But National Psoriasis Awareness Month provides only a small snapshot of the passionate work that many patient advocates, families and friends do on a daily basis to raise disease awareness, build communities and address stigmas.
With approximately 150,000 new Americans being diagnosed with psoriasis each year, advocacy continues to be a cornerstone for the psoriasis community. In the spirit of National Psoriasis Awareness Month, following are the stories of three inspirational advocates using their voices to raise awareness and increase understanding surrounding the disease.
- Living with Psoriasis: Howard Chang on “How a Painful Disease Inspired Me to Advocate for Others”
When Howard Chang was just 8 years old, he was diagnosed with psoriasis. As a child, Chang had no idea the type of impact being diagnosed with a chronic health condition would have on his life. Going through periods of isolation and social rejection, Chang eventually found his voice – turning a potential liability into an opportunity to help others. Now, Chang volunteers with the National Psoriasis Foundation, serves on the advisory panel for the HealtheVoices conference and manages an expert column entitled The Itch to Beat Psoriasis on Everyday Health.
Read the full story here.
- Psoriasis Psuperhero: Jamie Lyn Moy
Jamie Lyn Moy is the loving mother of Andy, who was diagnosed with psoriatic arthritis at the age of 5. But throughout her own disease journey and her ongoing fight to help spread psoriasis awareness, she says she has learned much from her son: “I think Andy does more to support me. He’s always had a laid-back, go-with-the-flow attitude. Psoriasis and psoriatic arthritis have been with him for as long as he can remember. It’s just part of his life. He doesn’t hide from it, and he doesn’t care much about what people think. I think he’s got a great attitude, and I try to remember that when I am struggling myself.”
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- The Patient Side: Diane Talbert on pain, stigma and life with psoriasis
Diane Talbert has had psoriasis for more than 50 years and psoriatic arthritis for 20 years. An active blogger and patient advocate, Talbert experienced tremendous personal growth since her younger years and uses her story to fight the stigma associated with psoriasis and to raise awareness. She says: “One of the greatest lessons I’ve learned in my life having psoriasis is talking about it. I’ve had to tell doctors, teachers, employers, friends and sometimes strangers about my disease. … I share my pains to inspire not for pity; my triumphs are your triumphs in the hopes of touching the life of those also affected by this autoimmune disease.”
Read the full story here.
To find National Psoriasis Awareness Month events happening near you, visit the National Psoriasis Foundation’s website. To get involved in the Chronic Disease Coalition’s ongoing patient advocacy efforts, click here.