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Tackling the Stigma Around Plaque Psoriasis

Tackling the Stigma of Plaque Psoriasis

 

Growing up with atopic dermatitis and severe plaque psoriasis, Howard Chang frequently encountered negativity because of his skin. In addition to managing the discomfort and painful symptoms of plaque psoriasis, he also faced bullying that chipped away at his confidence and made him question his self-worth.

While Howard spent years struggling with feelings of depression and isolation, today he’s committed to empowering patients and using his voice to help others feel less alone. I recently spoke with Howard about his journey from patient to advocate and had an opportunity to explore the steps he’s taken to challenge the stigma around atopic dermatitis and plaque psoriasis and help patients like him feel more hopeful about their future.

Navigating Cultural Discrimination and a Complex Medical Diagnosis
Howard grew up as a child of immigrant parents who moved to the United States from Taiwan. At eight years old, he was diagnosed with plaque psoriasis in addition to atopic dermatitis, commonly known as eczema. I was immediately struck by his unique dual diagnosis and complex medical history, as Howard revealed more about the physical and emotional toll it took on him over the years.


Howard Chang is a patient advocate and ordained minister, husband and father

Today, Howard sees that he didn’t always have the support he needed to adequately cope growing up. As one of only two Asian Americans at his school, he was frequently bullied and ostracized for being Chinese, and having visible skin diseases only made things worse. Suffering through bouts of depression, Howard bottled up his emotions and withdrew socially. In an effort to overcome this adversity, Howard channeled his energy toward working hard and pushed himself to excel academically.

As I listened to this emotional account of Howard’s childhood, it reinforced how harmful the social stigma can be for patients with plaque psoriasis and atopic dermatitis, in addition to the physical discomfort of managing their condition. While it’s difficult for many to imagine how profoundly these experiences might impact someone, especially during their formative years, hearing firsthand accounts from patients like Howard is critical to broadening our understanding of the physical and emotional burden associated with these diseases.

Embracing Spirituality, Advocacy and Finding His Voice
After years of anger and frustration and a great deal of soul-searching, Howard’s feelings of hopelessness eventually gave way to faith, spirituality and finding his greater purpose in life. He was inspired to complete training as a minister and become a pastor. Fulfilling that calling enabled him to become a great listener and embrace storytelling as a means to cope with his emotions.

When he began sharing personal stories during his sermons—like how he was teased in the locker room during track practice for having inflamed skin or was treated as though he was contagious, or even how he wore long-sleeve shirts to cover his body on 100-degree summer days—people thanked him for his courage to open up. For the first time in his life, he felt accepted by others and it was such a freeing experience that it opened his eyes to the world of patient advocacy.

A few years later, when his plaque psoriasis was at its worst, Howard became a trailblazer in his own right—starting a blog and chronicling his experience living with plaque psoriasis during a time when blogging was still a novel idea, which paved the way for many others to follow in his footsteps. His creativity gave way to a new outlet that enabled him to process his own experiences and do so in a way where he could share them more broadly, all in the hopes of helping others feel less alone.

As a pastor, Howard frequently encounters people with good intentions who don't quite understand what he’s going through and offer unsolicited advice about various remedies or input regarding his diet or stress levels. Rather than losing his patience, Howard now welcomes these opportunities to connect with others and help them understand his journey.

"When people don't understand something, it can be hard for them to empathize," he said. "I try to view these instances as teachable moments. There will always be stigma associated with a disease that’s visible to those around us, but there's also an opportunity to educate and further someone’s understanding."

Looking Ahead at Advances and Opportunities for Change
For the millions of people living with immune-mediated diseases like atopic dermatitis and plaque psoriasis, there is still much to be understood around how these conditions manifest from patient to patient. As we continue to understand the full impact of these conditions, we must never lose sight of Howard and the patients who struggle to shoulder the physical and emotional burden day to day.

I am grateful to have the opportunity to have met Howard, someone who has overcome significant hardship in his life and still finds ways to give back to others. His resilience, his courage—and the unique experiences of others facing these chronic dermatologic conditions—inspire us to work harder every day to break down barriers, to break down inequities, and to relentlessly advance patient care.