• Fun in the Sun?

    South's Nunez sisters must take great care due to a condition that burns their bodies from the inside
  • When the sun finally came out and the weather turned warm this past weekend, the change in climate seemed to be celebrated throughout the Rogue Valley.
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  • When the sun finally came out and the weather turned warm this past weekend, the change in climate seemed to be celebrated throughout the Rogue Valley.
    It's the same each spring, with athletes and fans alike pine for the day when they can put the overcast winter skies behind them and bask in the warming glow of the sunlight.
    South Medford High sisters Kylee and Taylor Nunez can be counted among those who enjoy the warmer weather, but they're also not without reservations when it comes to the sun.
    For some like the Nunez girls, too much exposure to the sun can actually be excruciatingly painful.
    Kylee and Taylor each were born with a rare gene mutation called Erythropoietic Protoporphyria (EPP), which causes very painful photosensitivity and potentially damaging effects on the liver.
    "When asked, I just tell people I'm allergic to the sun and the sun isn't good for me," says Kylee, 18. "I just say it's like a sunburn but on the inside of your skin."
    With porphyria, the girls are susceptible to red blood cells essentially heating up and burning their bodies from the inside. Beyond tremendous pain, there's often extreme swelling, burning and itching of the skin after too much exposure to sunlight, including sunlight that passes through window glass.
    According to the American Porphyria Foundation, which is celebrating its 30th anniversary this week, blistering and scarring of the skin are characteristics of other types of porphyria but unusual for those with EPP.
    Despite being faced with such unusual circumstances, neither Kylee nor Taylor is letting their EPP stop them from doing what they love — and that is a central message being bandied about as part of National Porphyria Awareness Week, which began Sunday and runs through Saturday. For more info on porphyria, go to porphyriafoundation.com
    Kylee is a senior pitcher and first baseman for the South Medford softball team, while 16-year-old Taylor is a sophomore javelin thrower and shotputter for the track and field team. Both also have played volleyball and basketball at South.
    "After a while I've learned to deal with it and just kinda go with the flow," says Kylee, who is hitting .378 with 10 runs and nine RBIs and has a pitching record of 3-7 with a 4.85 ERA for the Panthers, who are 4-10. "If it hurts, it hurts, I just have to get out of the sun eventually. I just try to get through the best I can."
    Taylor agrees, noting that it's far better to test your limits than sit back indoors and hide from the world.
    "You just get used to it because you have no choice but to deal with it," says Taylor, who set a PR in the javelin Saturday in the Crater Classic at 83 feet, 4 inches and boasts a 24-8 mark in the shot put. "I don't really limit my sun exposure. I still go out there, but when I do I just make sure to get under a tree or find some shade when I can."
    The Nunez family had no knowledge of EPP or any inkling of major medical issues from sunlight exposure until Kylee was 2 and woke up one day during a trip to San Diego so swollen from head to toe that she couldn't see, with only little slits for eyes. The family was bound for San Francisco that day and was fortunate to get in and see a doctor, whose diagnosis was that Kylee was allergic to the sun.
    The family lived under that assumption for a decade before finally learning that there really is no such thing as being allergic to the sun, and that there was a more deeply rooted issue called porphyria.
    "Over the years we just grew up with the doctor telling us that they were allergic to the sun and that they could only go out in the sun after 6 p.m. or else that would just aggravate their skin," says the girls' mom, Diane Nunez. "That's kinda hard keeping two kids in the house all day, but there really wasn't much of a choice for us."
    As you can imagine, such a scenario wasn't much fun for Kylee and Taylor, although they were able to adapt.
    "It would kinda suck because we couldn't go out and play with our friends and had to wait for it to get cooler before we could go out," says Kylee. "We'd go out just when they would be inside having dinner, so it was nice having a sister with the same problem because we mostly just played together."
    The girls each got into sports at an early age, with softball coming first. It was easy for them to compete at the beginning because Little League contests didn't start until 5:30 p.m. and their mom was their coach and made sure practices occurred later in the early evenings.
    As the years progressed, however, more afternoon and day games made their way on the schedule and the girls did their best to adjust with visors, ice packs and liberal sunscreen application.
    It was when Kylee was 12 and competing in an AAU softball tournament in Bend that everything finally came to a head. After a day's worth of games and sun exposure, the family went to dinner that night and Kylee suffered a major outbreak.
    "We had sunscreened and everything but just the itching and burning were so much that she couldn't sit still and couldn't handle it," says Diane. "She was literally screaming in the restaurant from all the pain. We drove back home that night with the air conditioning blasting and I was freezing but she was still not comfortable."
    Another trip to the doctor, this time locally, ensued, and that's when blood work showed that Kylee actually had a unique medical condition. The advice was to get her to a specialist in Eugene, but Diane knew that only meant a road to Portland and another stop at Doernbecher Children's Hospital.
    "Once they said they had a suspicion of what it is, I just knew I'd be going back there," says Diane, whose first daughter, Jordee, was sent there for a rare genetic disorder called Goltz-Gorlin Syndrome. Complications from that disorder claimed Jordee's life 11 days after her first birthday.
    While the family was at Doernbecher's for Kylee's testing six years ago, it wasn't long before doctors urged that Diane whisk away Taylor to have her blood drawn for tests. Both girls produced blood work that was off the charts in terms of porphyria. It was then that the family learned of EPP and received background on what the girls were dealing with and why.
    An initial question was whether they should abandon their spring and summer sports, but they were assured they could continue so long as they used precaution.
    "That was a relief to hear because we've always wanted to keep them involved and occupied," says Diane, whose husband Robert died of a heart attack when she was five months pregnant with Taylor. "I didn't want them to sit at home and not do anything. They do play volleyball and basketball, but they want to go swim with their friends and do those outdoor things. They can, they just have to be careful when they do it."
    Both girls say their friends, teammates and coaches have been extremely supportive as they deal with porphyria. Outings with friends often get tailored to ensure that the girls aren't too exposed to the sun, while coaches have used caution with their athletes and been understanding whenever issues arise.
    "I've never had to pull her from a game because of it," South Medford softball coach Miranda Gillaspie-Smith says of Kylee, "but she's a pretty tough girl and she's on it when it comes to taking care of herself. With all the kids, when you're playing a tournament and several games in a row, it's not like any of them are sitting out getting a suntan between games. You're in the shade, getting water and trying to cool down no matter who you are."
    For Kylee, cool, wet towels or wash cloths seem to do the trick when she begins to get that familiar tingle in her lip that turns into sensitivity in her hands and face. For Taylor, ice packs are the preferred method to combat early warning signs. Both girls use a sunscreen that's not your typical over-the-counter variety and rates at an SPF of 85.
    Neither girl, however, is willing to don huge, overbearing hats or go over the top in blocking the sun and heat.
    "I'd rather have a reaction than wear something huge on my head," laughs Kylee. "I'll just deal with the pain."
    Swelling for the girls can last a few hours for minor setbacks to a couple days at their worst. Typically, says Diane, the first reaction of the year is the worst and then the rest are lessened.
    That's easier to say than live through, but Kylee and Taylor seem to be handling it just fine.
    Reach reporter Kris Henry at 541-776-4488, khenry@mailtribune.com, www.facebook.com/krishenryMT or www.twitter.com/Kris_Henry
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