Difficult Times are Hurdles, Not Walls

The 40-minute drive out to Corona was deceiving; the cool morning air was no indication of the racing conditions that were to come just a few hours later. I was in 7th grade, just a few months into my first cross country season with the South Orange County Wildcats Youth Track Club, and on my way to one of the last meets of the year. During that 5 a.m. drive, I couldn't fall back asleep. Yes, I felt the normal pre-race jitters, but this weekend the weather report told me I had a bigger problem to worry about: 90 degree heat was due just in time for my run.

Two years earlier, a dermatologist had diagnosed me with  congenital ichthyosiform erythroderma (CIE). Because of ichthyosis, my body can overheat very easily. My dermatologist isn't exactly sure why, but something about the excess skin prevents sweat from being released from my pores to cool me off, so even mild temperatures can be uncomfortable. As a kid, I played soccer, but never at an intense enough level for me to put myself at risk. However, in 6th grade I ran the Dana Point Turkey Trot 5K with my mom, and while there I saw the Wildcats Track Club running and winning every youth medal available. From then on, I was obsessed. For months, I begged my mom to let me try out for the team, but she and my dad always agreed that it was too dangerous for someone with my condition. I'm not sure if they were so annoyed with my badgering or did some research without telling me, but finally they contacted the coach, and from that point on I've run every day of the week, six years in total so far.

Unfortunately, I can't just step onto the track and run freely like most people. On nice days when the sun hides behind the clouds or rain provides relief, I'm free to train like anyone else. But when my race is in Corona in desert temperatures, I employ another solution. During races like that one, my mom stands on the sidelines and literally heaves a gallon of water on me as I go past! While it's not exactly sweat, this personal oasis is the only way I can even hope to cross the finish line in scorching heat, and I'm so grateful my mom thought of the idea. In high school races, the California Interscholastic Federation (the governing body for high school sports) prevents any interaction from spectators, so I've had to sit out several races when the heat is just too much because my great idea is foiled by their one-size-fits-all rules.  For the meltingly hot practices, I wake up at 4 in the morning to run before school, trying to keep my eyes open but always thankful for every stride I can take.

I'm pretty sure everyone affected by ichthyosis hopes for a cure, at least sometimes. I know that when I'm forced to sit in the shade and watch my team run past, I always wish for some magical pill or shot or lotion that would make all my symptoms disappear, but right now that's not an option. Ichthyosis has taught me that there will always be challenges in life, from having a recessive skin condition to struggling in math, but that looking at these difficulties as hurdles instead of walls can help us build strength and reach even our craziest goals.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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