Advocating for My Son with Congenital Ichthyosis, a Rare Skin Disease

Written by Christina Fleagle

There are millions of people around the world living with a rare disease, and for many, you may not know it by looking at them. But when people see my 12-year-old son Peyton they know he is different.

Peyton lives with a form of congenital ichthyosis (CI) called X-linked ichthyosis, a genetic rare skin disease typically seen in males that causes dry, thickened, and scaling skin. People can develop patches of scaly, 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, even including his scalp and hairline, which suffocates the hair follicles and causes him to lose his hair. His itching is so intense that at night he often 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. The first time Peyton realized he was different was in kindergarten – he asked his classmates how often their parents have to lotion their bodies and realized that his routine was not typical.

I admire Peyton’s spirit and confidence. He has not let this disease define him or impact his positive outlook on life. He has always been able to find friends who don’t judge him by his appearance. His response to kids teasing him is, “If they don’t want to be my friend or get to know me because of my skin, then I don’t want to be their friend.” One of the best things about Peyton is that he doesn’t care what others think. And despite the interruptions his condition can bring, including many sleepless nights due to intense itching, he gets straight A’s in school, is an avid reader, participates in Boy Scouts, and enjoys playing Dungeons & Dragons and chess.

Interestingly, several men in our family also suffer from ichthyosis (my father, grandfather and two cousins) but Peyton did not receive an official diagnosis until about a year and a half ago. When Peyton was an infant and started presenting symptoms, his dermatologist said genetic testing would be able to confirm if he had ichthyosis but he did not feel testing was worthwhile at the time. Throughout his life, Peyton has tried countless medications including creams and lotions for eczema, steroid creams and other topicals, but none were effective in alleviating symptoms. There is hope as there are promising investigational drugs in development for treatment of X-linked ichthyosis.

We also recently became involved with the Foundation for Ichthyosis & Related Skin Types (FIRST), which has been life-changing and provided a whole community of support. I only wish we found FIRST sooner to learn from other families about the optimal strategies for managing this disease, and that is why I am such a fierce advocate now, to help educate others based on my experience.

It is inspiring to see how Peyton is so fearless, and that has helped me and my family navigate managing his condition on an emotional level. If he can get through this, so can we, and with a community of support behind us and potential treatments on the way it paints a picture of a better future.

Author Bio: Christina Fleagle is a mom of two from Agawam, Massachusetts. Her younger son Peyton was diagnosed with X-linked ichthyosis when he was about 11 years old after developing symptoms of the disease as a baby. Christina and Peyton now share their experiences in an effort to build awareness of this rare genetic skin disorder.

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