![]() ![]() Milder cases may mimic ichthyosis vulgaris.Ĭorneal opacities are asymptomatic. The ichthyosis is particularly common over the shins. ![]() He doesn't feel bad that he has the condition.Scaling is located mostly on the extensor surfaces of the body and the sides of the trunk, sparing the face, although the scalp and neck are often affected in infancy. ![]() Petyon luckily hasn’t faced a lot of bullying about his skin, though his mom worried he would. “We now know so much more about it, the different kinds, how his ichthyosis affects him, what the actual symptoms are … what we can do to keep him comfortable.” “We were blundering through about 10 years of his life where we knew he had something,” Fleagle said. As part of that process, he received confirmation that he did have X-linked ichthyosis. Through the organization, Peyton was able to enroll in a phase 2 clinical trial of a medication to treat ichthyosis. “We’re pretty sure it’s what’s called X-linked ichthyosis, which means its linked to the X chromosome, and it’s passed down to the males in our family.”įleagle learned there was a group for people with ichthyosis - the Foundation for Ichthyosis and Related Skin Types (FIRST) - through her cousin who has two children with the condition. “My dad would say, ‘Oh yeah, I have dry skin, but I don’t do anything about it,’” Fleagle said. In the winter, it can become so dry that his skin cracks and “feels almost like tissue paper.” Still, Peyton takes it in stride. The condition means that Peyton can’t sweat, so he can’t play sports or even hike for too long. It started on his shins and moved upward onto his torso, arms, neck and scalp. “Nothing really stopped it from spreading.” Christina Fleagle is a carrier for X-factor ichthyosis and can give it to her children. “We just started trying to find our own lotions and ointments and oils that we thought would help keep his skin comfortable,” Fleagle said. The frustration they felt over the costly and ineffective medications caused the family to search for their own ways to soothe Peyton's skin. They also cost a lot of money - “$700 for just one little toothpaste tube,” Fleagle said. Peyton tried topical steroids and eczema creams, but nothing really worked. “There are several different kinds, and each kind reacts to medications differently.” “In hindsight, we do wish we had the genetic testing done so we knew exactly what kind of ichthyosis he had,” she explained. At the time, she didn’t realize that undergoing genetic testing could have helped Peyton. After years of feeling alone, frustrated and helpless, Fleagle wanted to share their story to support others.įleagle had noticed that some of her male relatives also seemed to have red scaly skin. Recently, Peyton, now 12, participated in a clinical trial for a treatment for the condition, and the family joined a patient support group. He recently participated in a phase 2 clinical trial that seems to have reduced the red scales on his body, according to mom Christina Fleagle. “We blundered along trying different lotions and oils.” At one point, Peyton had ichthyosis covering 95% of his body. “Based off what we were told by our doctor, we thought it was so rare that there weren’t really many other people out there with it, and there wasn’t much else that we could do,” Fleagle, 37, of Agawam, Massachusetts, told TODAY. But they were offered little hope that he'd get better. It grew to cover 95% of his body and caused such discomfort that Peyton sometimes scratched himself bloody at night. Soon after, he was diagnosed with ichthyosis, a rare condition that causes red or pink dry, rough scales on the skin. ![]() When Christina Fleagle’s son Peyton was 18 months old, she noticed red scales on his skin. ![]()
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