Addison Kypreos competed in the Oregon Kids Triathlon Aug. 10 like many other youngsters, but her attire was a little bit different.
She was dressed in clothing from head to toe, with every bit of her skin covered, despite the summer temperatures.
The Brooklyn 8 year old participated with a condition known as Erythropoietic Protoporphyria, or EPP, a disorder that causes extreme sensitivity to sunlight.
After competing in the swimming portion of the triathlon, Addison transitioned from her swimsuit to her protective garb — leggings, sleeves, gloves, long socks, a ski mask and a sun hat for the biking and running portions.
That outfit prevented sensations of “skin stinging, prickling and burning on exposed areas” of the skin, all symptoms of EPP, according to the National Library of Medicine for the National Institute of Health.
Addison has been battling with these symptoms since she was six months old, her mother Erica Kypreos told the Observer.
Erica, sitting at a picnic table at the triathlon with Addison and husband, Sean, talked about the day she realized something was wrong.
The Kypreos family had been living in California at the time, and when Addison was a year old they decided to take her to a boardwalk out in the sun. The day didn’t go according to plan, as Addison was soon “screaming in pain,” Erica recalled, and when her skin became discolored and bruised Erica knew something was going on.
Addison’s parents took her to their doctor, who thought she had seizures. But Erica knew that couldn’t be right, she said. Over the next two years, going from California to Washington and back to California again, Addison was misdiagnosed with eczema and pollen allergies by four different doctors.
“None of it added up,” Erica said.
When Addison was 3 years old, she was diagnosed with EPP at Stanford Medical in California.
“It was the fifth doctor that finally diagnosed it,” Erica said.
While Addison plays indoor sports such as volleyball and hockey, she also often goes outside to play with her twin brother, who doesn’t have EPP, during what they call “Sissy Time” after the sun goes down. EPP doesn’t stop Addison from going out in the sun, either, as long as she takes the proper precautions.
Addison’s parents often reassure her that it’s ok to be different, and her EPP hasn’t stopped Addison from doing what she wants to do.
“If everyone else can do it, I can do it.” Addison said.
Erica said as soon as the fifth doctor walked into the room, he knew what it was.
Ever since then, the Kypreos have been finding ways to protect Addison from the sun. If she is exposed Erica said Addison has described her suffering as her “skin feeling like a melting candle, her blood is boiling inside her body … It’s like her skin’s on fire, like she’ll try to crawl out of her skin.
“When she gets a reaction, she just has to power through it … it’s just a waiting game,” Erica added.
Addison has found that using a fan, ice pack and cold towel can relieve some of the pain, along with taking a cold shower, she said.
There are other long term effects of EPP as well, including liver disease ,according to the National Library of Medicine for the National Institutes of Health. Addison’s parents have taken measures to avoid this, Erica said.
“Every six months she gets bloodwork done,” her mother said. “A liver transplant could be something in her future.”
Despite the challenges that EPP brings, Addison is determined to live a long, active life.
“I want to be an outside person,” Addison said.