Your Story Series: Howard Chang
Howard has lived with severe psoriasis and eczema since childhood. He is an active National Psoriasis Foundation (NPF) member and was named the 2021 NPF Outstanding Volunteer of the Year award winner. He serves as an NPF Western Advocacy Committee Co-Chair and on the 2022 Capitol Hill Day Committee. Howard has written his psoriasis column, The Itch to Beat Psoriasis, on Everyday Health since 2007 and was named one of the 2018 WEGO Health Top 10 Lifetime Achievement Patient Leaders. He has served on various patient panels and industry advisory groups, including Determi-Nation—a movement that addresses inequities in psoriatic disease among people of colour. Howard is the first patient advocate editorial board member for the journal Dermatology and Therapy.
As an ordained minister, Howard has worked in churches and university settings since 1995 and holds a Doctor of Ministry degree from Fuller Theological Seminary. He grew up in the San Francisco Bay Area and now lives in the greater Sacramento, California area with his wife, with whom he has three adult children.
1. What skin condition do you have?
I have severe plaque and guttate psoriasis, as well as atopic dermatitis (eczema).
2. When were you diagnosed?
I was first diagnosed when I was about eight years old. My parents thought I had a rash that would go away on its own. When it didn’t, they took me to see my doctor, who then referred me to a dermatologist. Later, my psoriasis diagnosis was confirmed by the University of California, San Francisco dermatology department.
3. When/How did you first notice something was different with your skin?
I started noticing rashes on my skin after sleeping in a new unwashed sleeping bag that had residual chemicals from manufacturing. Later, my psoriasis exploded everywhere on my skin when I had a strep throat infection accompanied by a high fever.
4. What is like living with psoriasis?
I can’t remember a time when I didn’t have psoriasis as a significant part of my life. As a constant and chronic disease, its presence can be a source of frustration and hopelessness. It’s tiring to keep up with my skincare routines each morning and evening. Sometimes I just want to take a break from managing and thinking about my psoriasis.
On the other hand, psoriasis has taught me valuable life lessons. I’m a more compassionate and accepting person having faced rejection, ostracism, and low self-esteem from having a visible, stigmatising condition. I understand what it’s like to endure through difficult and uncomfortable circumstances. As a result, I’ve dedicated my life to helping others, including those suffering from chronic illnesses like psoriasis.
5. What do you do to manage your symptoms? Are there certain triggers that make these symptoms worse?
My primary treatment is a biologic medication that I inject every eight weeks. I started biologic therapy almost twenty years ago when the first ones were approved for psoriasis. I also use topical steroids, phototherapy (narrowband ultraviolet light), and moisturisers. Scalp psoriasis is particularly difficult to treat. There is a foam with a topical steroid that help keep my scalp inflammation under control.
Stress is a major psoriasis trigger for me. When I am busy, feeling pressure, or in crisis mode, I notice my psoriasis will often worsen. Another trigger, insomnia, is related to stress. I don’t sleep well when my mind is focused on deadlines or anxious thoughts. The stress of psoriasis, especially itchy flares, can keep me up at night and exacerbate my psoriasis as well. I don’t drink alcohol as it’s a trigger for my psoriasis and eczema. Sunburn is another psoriasis trigger that I need to watch out for in the summer.
6. What, if anything, have you had to change about your lifestyle to manage your psoriasis?
I’ve adjusted my lifestyle for psoriasis in a few ways. When I learned how psoriasis can be associated with other conditions such as cardiovascular (CV)disease and diabetes, I committed to regularly exercising (I enjoy jogging, walking, and biking) and watching my diet. I don’t eat a special psoriasis diet; rather, I try to eat a balanced diet that lowers my CV disease risk and keeps my weight in a good range.
More recently, I’ve learned to slow down and rest. For years, I pushed myself at work and took on activities that kept me quite active. Now I recognise the importance of a healthy rhythm to life that incorporates periods of restoration and reflection. I’m better at listening to my body, especially when I’m battling a skin flare that needs extra attention.
7. What is a common misconception you’ve noticed about psoriasis?
Psoriasis is contagious. As an immune-mediated condition, the source of inflammation is not something that can spread from contact with a person living with it.
Psoriasis is just a rash. I’ve heard people tell me that it’s only a skin rash and to not make too much of it. But living with psoriasis has impacted my life profoundly including my mental health, relationships, energy levels, goals, and finances.
What’s one thing you want people to know about living with psoriasis?
Psoriasis is much more treatable than it was when I was first diagnosed. It’s amazing to see the advances in understanding the origins of psoriasis and how to effectively treat it over the past forty years. Find a dermatologist that is experienced in treating psoriasis and set treatment goals with them that make sense for you.
9. How do you feel about your skin today?
I am at peace with my skin today. When I was a younger adult, I hated my skin and wanted to leap out of it. Psoriasis became my lifelong arch enemy that never went away. But with the help of my faith, family, and a bit of talk therapy, I’ve come to accept that psoriasis is a part of my life. I would be thrilled to have psoriasis gone, but if it’s going to stick around, I’m determined to do my best to manage it and move forward with my life.
What would you say to others who are struggling to feel comfortable in their skin?
Don’t give up! You are not alone. I’ve been 95% covered with psoriatic lesions feeling despondent and hopeless. I miraculously found out that a co-worker’s relative was a world renown dermatologist who treated the toughest psoriasis cases at a university health centre. That dermatologist helped me find a treatment that began to clear my skin and give me my life back. You never know where help is going to come from.
You are not your skin. While I have psoriasis, and it’s an indelible part of my life, I am not my psoriasis. Don’t let psoriasis stop you from reaching your goals or living an active, full life.
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