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sunlight allergy
Covered in thousands of freckles, Andrea Ivonne Monroy, 26, who has xeroderma pigmentosum (XP) – where the skin cannot repair DNA damage caused by sunlight – never goes out during the day, unless it is for a medical appointment, and then she has to carefully protect her body and face.
And the incurable condition, which shortens life expectancy to just 37, also increases sufferers' cancer risk and means women need to have children young, before their hormones change.
Andrea IvonnePA Real Life Collect
Yet Andrea Ivonne, who lives with her parents in San Diego, California, where there are on average 146 sunny days and 117 partly sunny days a year, refuses to see XP as a handicap, saying:
“I just love being this human that I am. I'm complete with the human I am. I'm complete with everything I am and what I have."
“I am in the menopause, as women who have what I have go through the menopause faster than women without it, but I don't want to have children. I wasn't born to be a mother."
“You don't need a significant other to be complete. You don't need a child to be complete or to be a woman. I'm fulfilled because of who I am, the person I've become and I just love what my life is."
Having XP means the home Andrea Ivonne shares with her parents, Martin and Maria, must be kept dark during the day with curtains that block out UV light.
Andrea IvonnePA Real Life Collect
The family can only use LED lightbulbs inside and Andrea Ivonne has to carry a light meter with her and wear a protective hat and mask if she does leave the house.
Having XP increases her risk of developing all types of skin cancer, including melanomas – which can spread to other parts of the body – and since the age of six, when she had her first surgery to remove cancerous growths on her face, she has had 27 operations.
Andrea IvonnePA Real Life Collect
“That first surgery was my first real memory of knowing there was something weird going on with me," she said.
“I woke up after the surgery and it really hit me."
Her body's severe reaction to all light, but especially sunlight, means daylight actually hurts her eyes – a common symptom amongst XP sufferers.
Andrea IvonnePA Real Life Collect
“It can feel as if my eyes are burning," she said.
“I wear a hat that has a protective see-through guard and if I do have to go outside in daylight, I will check the light levels using my light meter and go home if they are too strong."
The family car even has blacked out windows, so that Andrea Ivonne can travel outside the home, but she tends to stay indoors in the dark and only ventures out at night.
Andrea IvonnePA Real Life Collect
“I'm not out partying and going to bed when other people get up," she said.
“I sleep normally at night and get up in the morning, just like other people do. The difference is I don't go out in the day. I work from home on my blog and my YouTube channel."
Andrea Ivonne's XP also meant she had to be home-schooled by her mum and she has never been able to go out to work.
And in 2014, when she attended the XP Family Support group conference, she learned that female XP sufferers need to have children before their late twenties, because the condition also means they will go through an early menopause.
Andrea IvonnePA Real Life Collect
“From the age of 11 or 12, I knew I never wanted kids," said single Andrea Ivonne.
“I just never saw myself in the future with children."
She has, however, admitted in her blog called nightlens that going through the menopause is tough.
“My body is so tired. I get exhausted a lot, my moods have been on a roll, my migraines are back and so many other things have been going on with me."
“But I am getting better and I am slowly getting back to my old self and that feels wonderful."
As she has got older, Andrea Ivonne has also found that, while the cancerous growths she developed used to just be on her face, there are now signs of other parts of her body being affected, too, including her stomach and hands.
Andrea IvonnePA Real Life Collect
As a result, she has had them removed. Another heartbreaking factor is her low life expectancy but, again, this is something which Andrea Ivonne refuses to dwell on.
“I am really happy with my life and see how beautiful life is," she said.
Still, despite all the restrictions XP has imposed on her life, the brave young woman remains admirably positive.
Andrea IvonnePA Real Life Collect
“I'm okay with it all now," she said.
“Four years ago, I had a really bad depression over it but then I decided to learn to love myself."
“I read of lot of inspiring books and took up yoga and meditation, and now I am happy in a way I never thought I could be."
“I never imagined I would be working as a blogger or have my own YouTube channel and so I think it was all just meant to be."
She concluded:
“If I think about my life five years from now, I want it to be just as it is now. I am happy and I want to stay that way."
You read more about Andrea Ivonne on her blog www.nightlensblog.com or follow her on YouTube @nightlensblog