One of Many
30 Oct 2023
When I was just two years old, my parents took me to the ER when my skin patches became increasingly inflamed, more severe than it had been so far. At first they thought it was eczema, but thankfully the doctor was able to provide a more accurate assessment and diagnosed me with Pustular Psoriasis, though it can become Erythrodermic Psoriasis without immediate intervention. To say this journey has been easy would be quite the understatement. For so long all I knew was Psoriatic disease. I have a long list of memories being in the hospital and at home gooped in ointment, lotion, and wet wraps trying to manage the pustules, flakes, tenderness, etc. When I was eleven years old, my Psoriasis became so severe that I had to become homeschooled, the first time since third grade. It was during this time where the pulsating pain became too much to stand, so I sat… a lot. Eventually, the skin behind my knees closed up while in a 90 degree angle, and I had to endure two to three months of physical therapy in order to walk again. I eventually got better with time, and I’m very grateful for the physical therapists who supported me throughout the whole journey. However, it wouldn’t be until 2017, after much trial and error with ointments, pills, and biologics, including Remicade in 2010 and Humira in 2016/17, where I’d finally know peace.
After my pediatric Dermatologist at the time suggested I get a genetic test done, we found out that a specific mutation in my genes, interleukin 36 RN (IL36RN), was present and likely the main reason for my Psoriatic disease. She then prescribed me Taltz, a biologic medication in the form of an autoinjector that I get once every four weeks that suppresses my immune system and thus reduces the inflammation. It had just been placed on the market the year before, and thanks to my family situation, Medicaid was able to fully cover the costs and I took it as soon as possible. Within a month I was close to full remission and frankly, it’s a blur afterwards. I just remember being relieved that I wasn’t in pain anymore and could get a full night’s rest. While I struggled with the fear that it wouldn’t hold up more than two years, I’m glad to say it’s been six years now of being in near, full remission. I do still get patches but only as an allergic reaction to chemicals from certain products and of course, sunburn. It always heals within a few weeks though, and I haven’t had a flare up since. However, my Psoriatic Arthritis has still presented all these years, and I’ve had to consider other methods to manage my joint pain.
Unfortunately, my depression had gotten worse after remission because of the aftermath of living with Psoriatic disease. I had sacrificed inumerous amounts of time and experiences in my adolescence taking care of my health, and by age 18, I was diagnosed with Major Depressive Disorder. It’s been a deeply difficult time, and this year is no exception, but after a serious experience in the hospital back March, I can say that this year I’ve made many strides in terms of mental health recovery. If you experience mental health struggles, be it through Psoriatic disease or otherwise, I need you to know I know how it feels. It can get better, no matter how small the progress may seem.
Interestingly, from 2015-2018, I was an active Psoriasis advocate on Instagram. It started in 2012, when it was just me and my iPod touch. It was also the first time I’d met anyone at all with the same illnesses as me. In fact, till this day, I’ve never met anyone in person with Psoriasis. Though, I have met people who had loved ones with it. For that small teenager who had just moved to a new state, the Psoriasis community quite literally saved me from even more deep seated loneliness. I had confirmation that not only were there other people like me, but they were doing something about living with Psoriasis. It kept me going for a very long time, and I had some valuable conversations with those I interacted with, particularly with other Asian women with Psoriasis/PsA. I never thought there would be other women out there like me who knew this path and I’m so grateful for all of them and what they do.
For the past few years, I haven’t been active in the community, mostly trying to focus my energy on taking care of my mental health, but it is always life affirming to know that when I come back, there are countless others in this community ready to help me along the way.