By Howard Chang, Psoriasis Advocate
My journey living with psoriasis is a long and often arduous one. I didn’t know what to expect as a nine-year-old child when the dermatologists at University of California, San Francisco confirmed the diagnosis. I only remember how much my life changed. Topical ointments and moisturizers, along with phototherapy, entered into my life for the first time. People’s stares and other children’s bullying tactics did as well.
Back then my family and I called psoriasis my “skin condition.” Now we know that the immune system plays an important role in mediated psoriatic inflammation. This inflammation can appear on the skin as raised, red, scaly, often painful, itchy plaques or lesions. The flakes from the skin making new cells in days rather than weeks piled up everywhere I went including my desk, bedsheets, and floor.
I only later came to understand that about 2-3% of the general population will be diagnosed with psoriasis—some 8 million in the United States and 125 million worldwide. I learned about the five types of psoriasis, psoriasis triggers, or how stubborn my psoriasis would be to treat. Research also revealed how psoriatic inflammation is not just on the skin and joints, but systemically in the body as well.
More Than Skin Deep
When you travel with someone you gain opportunities to get to know them better. Almost four decades down the road traveling with psoriasis I’ve come to know my version of it quite well. For me, psoriasis is much more than a skin condition. It affects my body, mind, and soul.
Psoriasis is more than skin deep.
People’s stares or children’s questions once cut me deeply emotionally. Trying different treatments, including an expensive stay at a psoriasis daycare center, hit the bank accounts. Those who didn’t know better, who feared psoriasis is contagious, steered away from me. I avoided wearing shorts or short sleeve shirts even in the hottest summer weather. The stigma of having a skin disease kept me from frequenting beaches and
public pools.
So, over the years, when the dermatologist asked if I wanted to try something new to better manage my psoriasis, I didn’t think too hard about it. The alternative felt unacceptable: up to 95% of my skin covered in psoriasis. One systemic treatment, though, left me feeling nauseous and fatigued. Another one appeared to spike my blood pressure. Yet another pill dried out my mucous membranes and caused my palms of my hands and soles of my feet to painfully peel. Light therapy, such as artificial ultraviolet light, worked for a time but sometimes burned my skin badly.
Then about fifteen years ago a new class of medications arrived promising to quell the immune inflammatory response: injectable biologics. These medications needed to be injected, I was told, because digestion would destroy it. They seemed like a better option as they targeted a particular part of the immune system instead of suppressing all of it.
You Want Me to Do What?
A healthcare professional administered the first biologic I took. First, I went to an infusion center for a short intravenous shot of medication. Later the nurse injected it into my arm intramuscularly. Unfortunately, that biologic proved ineffective to manage my psoriasis symptoms.
Next the dermatologist suggested I try the second approved biologic injectable. This one, though, I would need to inject myself under the skin. I reacted strongly thinking, “You want me to do what?” Hypodermic needles scared me since childhood. I learned to tolerate them for immunizations or other treatments. But self-injecting took my fear of needles to an even higher level.
The doctor graciously trained me how to self-inject. The first time I injected at home I felt a great deal of anxiety. But I felt like I had no other choice if I wanted this type of therapeutic. For the next decade I would self-inject biologics to treat my psoriasis hundreds of times—sometimes even while traveling, which was another challenge.
Traveling with Needles
With the introduction of biologic medications, the journey with psoriasis included taking them with me on my business trips and vacation. Packing the injections with me meant planning and preparation. I carried the needles in a zippered pouch with an ice pack in its original packaging along with a copy of the prescription. I made sure I
had a small Sharps container or could find them along the way in an airport or hotel.
Traveling with a biologic worked out well until one fateful summer vacation. On that trip to Mount Rushmore in South Dakota I packed two injection pens. I first checked with the airline the protocol for bringing them onto the plane. As usual I felt anxious about getting through security screening at the airport, but I went through smoothly without any questions.
On the next leg of the trip I endeavored to keep the medication chilled with ice packs. We arrived in Rapid City before the hotel check-in time so we went downtown to get a bite to eat. When I came out of the restaurant I realized I left my backpack, with my medication, in the car. Sure enough, the summer sun heated up the inside of the car enough to render my injections unusable.
Thankfully, the family and I enjoyed the vacation despite the mishap with my needles.
Doing What’s Necessary
Treating my psoriasis is a necessary priority in my life. I have traveled to a light therapy clinic thirty miles away three times a week to treat it. I take the time required every morning and evening on my daily skin routines. I overcame the fears of injecting myself and learned the hard way how to travel with my medications.
I do what’s necessary to manage my psoriasis so I can fulfill my calling in life as a minister, parent, and advocate.
The journey with psoriasis hasn’t ended for me yet, but I look forward to a day when there’s a cure that makes me forget psoriasis. Until then it makes the journey pass a bit more quickly knowing others are walking along with me, and better treatment options are still to come.
