Local woman lives with disorder so rare she's one in a million

Andrea Monroy has xeroderma pigmentosum

SAN DIEGO - Imagine sunlight is your enemy -- that the slightest exposure could damage your skin beyond repair. That's what a young woman has had to deal with all her life.  

A rare disorder cast a shadow over her hopes and dreams, until the one moment she saw the light.

Andrea Monroy must wear big sunglasses, a special hood and gloves to do something most of us take for granted -- go outside.

Andrea has xeroderma pigmentosum, or XP, which is a rare genetic disorder that strikes about one in a million people in the U.S.

The disorder has prevented Monroy from ever going to school or playing outside with her sister.

If Andrea went out unprotected, what would happen and how quickly would it happen?  

"Well, for every XP kid, it's different," Monroy said. "Nothing would happen, but then in a few weeks or a few months, like something would appear."

Even on cloudy days, UV rays punch through, causing skin damage.  A person without XP has enzymes that can quietly repair the damage, but for people with XP, the problem goes below the surface.

Those with XP lack the enzyme that repairs UV damage, and that makes them 1,000 times more likely to get skin cancer.

"Even a minute in the sun can lead to skin cancer in these individuals," said pediatric dermatologist Bari Cunningham, who is Monroy's doctor.

"The average age for your first skin cancer is about 18 months to two years," Cunningham said.

Monroy has had 15 surgeries to remove skin cancers, but things got brighter three years ago at her first XP conference.

"I finally realized that I'm not the only one with this … I felt like I was, I don't know, like home," Monroy said.

At the conference, she met Caroline Beckman, a true friend.

"She just totally caught my eye because she just had this huge smile on her face," Beckman said.

They became fast friends, and Beckman, who attends the University of San Diego, is part of an XP support group.

"It's her life and she's going to live it to the fullest and i think that takes a lot of strength and so I just admire her," Beckman said.

And living life doesn't just mean indoors -- it means getting out at night to a Padres game or a Brad Paisley concert.

What is the one thing Monroy would like to tell people?  

"Just not to judge people and how they look," Monroy said. "I'm truly happy; I'm just looking forward to what's next for me."

The XP Family Support Group helps people like Monroy. The nonprofit organization holds fundraisers and accepts donations so it can provide XP patients with retreat trips. Donors also can sponsor a child to go on a retreats.

For more information, visit www.xpfamilysupport.org.

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