The Strength of My Son With Rare Skin Disease

I knew my 12-year-old son Peyton was different when he was just one and a half years old and started to develop scales on his body. They first appeared on his shins and upper thighs, then over time moved to his forearms, shoulders, and now they cover his entire body except for his face. Any parent wants to do anything to keep their child “healthy,” but after consulting a dermatologist immediately and trying several different topicals, including eczema and steroid creams, nothing could effectively alleviate my son’s symptoms. We eventually stopped bringing him to the dermatologist because none of the expensive prescribed lotions or ointments helped. Only after participating in a clinical trial and getting genetic testing (about a year and a half ago) did we finally get an official diagnosis. Peyton has X-linked congenital ichthyosis.

X-linked ichthyosis is a rare inherited skin disorder typically seen in males that causes dry, thickened, and scaling skin. People with this disease can develop patches of flaky skin on their back, legs, face, scalp, palms and soles, which leads to chronic itching, an inability to sweat, and a reduced range of motion. Peyton has scales all over his body, including his scalp and hairline, which suffocates the hair follicles and causes him to lose his hair. Perhaps that’s why he has fun with his remaining hair – it has been dyed pink (his favorite color) for the last five years!

Peyton’s itching is often so intense that at night he cannot sleep and sometimes scratches so much that he bleeds – I often must wash his sheets daily from the flakes of skin in his bed. We need to lotion his entire body every night to try to moisturize his skin. When Peyton was younger, he would often itch so incessantly that he would be sent to the nurse, and I had to leave work to apply his lotion. Now that he is older, Peyton goes to school with lotion and can apply it himself.

His inability to sweat also means that Peyton is unable to play many sports or exercise for long periods of time, especially in the summer. If we do outdoor activities as a family such as hiking, I always bring extra supplies including lotions, oils, cooling hats and towels. For years Peyton would say he feels more pain and tires easily compared to other people – and now we know it’s because of his ichthyosis!

Despite the physical toll this disease takes, Peyton has been remarkably fearless and positive throughout his life. He refuses to let his diagnosis define him. His response when any kids at school tease him about his appearance is, “If they don’t want to be my friend, then I don’t want to be theirs.” To have this level of strength and resilience at such a young age is inspiring and makes me so proud as his mother. In any other respect, he leads a typical pre-teen life. He enjoys Boy Scouts, playing Dungeons & Dragons, chess, reading, and manages to get straight A’s in school even with many sleepless nights and early wake-ups.

For Peyton’s entire life my husband and I have largely had to do our own research and “experiments” to try to best manage his symptoms. Only recently were we introduced to the Foundation for Ichthyosis & Related Skin Types (FIRST), which has been life-changing. We have learned so much about potential treatments in development and ichthyosis from clinicians and other families impacted by this disease – including tips and tricks about how to help kids cope with their symptoms and potential accommodations that school can provide.

It has been eye-opening and relieving to know we have an entire community of support behind us. Now I am working to be a support system for others and build broader awareness and education about ichthyosis. Peyton is charismatic and a born performer, so he is right alongside me and open to talking about his condition to help others!