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It’s winter, and many people are probably dreaming of the return of summer.
But for Andrea Monroy, summer means that going outside could be lethal.
Andrea’s skin was covered with freckles by the time she was five. She was diagnosed with xeroderma pigmentosum, a disease that makes the body unable to repair the damage from UV rays.
This means that she can’t go out in the sunlight unless she wears protective clothing, and even has to protect herself if she goes out at night. If she goes outside for too long, she could suffer aggressive skin cancer.
Only 2,000 people worldwide have this condition.
Her family has done their best to take every measure to protect her. The windows in their house are tinted, and she has protective head to toe gear for if she ever does have to go outside.
“In every single way I have a different life,” said Andrea. “I never went to school, as it wasn’t safe, and my mom taught me to read and write.”
She’s only 23, but she’s already had 25 surgeries to remove cancerous skin cells. She has ongoing treatment to remove her pre-cancerous cells.
“I usually don’t go out much in the day,” she says of her typical routine. “Everything I do is at night. When I go out, the sun must not touch my skin.
“I wear a hat that has a special plastic to protect me from the sun, not completely but it does help. And I also wear gloves, the material is special to protect me from the sun. It can be very hard but I cover all of my body by wearing jeans, boots, and a jacket.”
She says, however, that her difficulties don’t stop her from living the fullest life she can.
“I live each day, day by day. I don’t want to think about the future, I just want people in general to live and love life to the fullest,” she says. “I love my freckles and my scars. I’ve learned to love myself. I wish the world was more open.”
