In 1993, at seven years old, I was 90% covered with psoriasis. Due to my age and lack of research on adolescences with psoriasis, I did not have many treatment options.
After my initial diagnoses through early adulthood, I was prescribed a countless number of topical treatments which required use 2-3 times a day. Most of the cremes had either a tar or steroid component. The topical medications prescribed for my psoriasis were often sticky, smelled terrible, ruined my clothes, and were a nuisance to apply every day. Hardly any of the cremes prescribe to me worked. I’m not sure if it was because the medicines provided were truly ineffective or if it was due to my lack of compliance.
As a kid, I also did UVB phototherapy. This treatment is when you stand in a lightbox, similar to a tanning booth, for a prescribed set of minutes several times a week. The light works to penetrate the skin to slow down cell growth. I went around 5-4 times a week on and off for about 10 years with no results.
While in high school, I did an old school treatment called occlusion therapy, which required me to stay in the hospital for 3-4 weeks. I typically did this treatment during Christmas or summer break. This treatment required me to be slathered down in topical ointment from head-to-toe, placed in wet pajamas, and then a plastic sweatsuit. I sat in this suit for 8 hours a day, which was typically followed by a light treatment I mentioned earlier. Again, this therapy never garnered significant results.
Then in 2004, one of the first biologics, Enbrel, was approved to treat plaque psoriasis. Unfortunately, the injection was only approved for adults 18 and up. At the time, I was only 16 years old. However, due to the severity of my disease, my medical team attempted to get me special approval for the treatment. They took pictures of my condition and wrote up a long synopsis about my struggles with the disease, which mostly included my treatment failures and sent to the pharmaceutical company. 3 weeks later, the markers of Enbrel denied the request, and I wouldn’t be able to take my shot at the treatment until 7 years later once I was an adult in my 20’s.
Since I was first diagnosed with the disease, treatment options for kids have come a long way. In 2016 Enbrel was finally approved for use by kids between the ages of 4-17. Most recently Sterala was approved by use of kids 12 and up.
Psound Bytes is a podcast series from the National Psoriasis Foundation (NPF) which covers topics on psoriatic disease. In this episode, the NPF sits down with Dermatologist and Co-Chair of the Pediatric Dermatology Research Alliance (PeDra) Amy Paller MD, to discuss the latest findings in research for treatment and pediatric care for psoriasis. Click on the graphic and take a listen:
The National Psoriasis Foundation also has a resource for kids and teens living with psoriasis called Our Spot. There, you can find stories from young people living – and thriving – with psoriasis or psoriatic arthritis. There are also tips on how to communicate about the disease with everyone in their life, including teachers, friends, and even bullies.