A woman is forced to live in the dark due to a one-in-a-million condition that has made her severely ‘allergic’ to the sun.
Fatima Perez, 54, who suffers from Xeroderma Pigmentosum (XP), has to spend all day inside due to her being extremely sensitive to UV light.
The condition caused her to lose her hair and eyesight by the time she was 20, and she lives in fear that one day the sun could kill her.
Ms Perez, whose brother died of the same condition, is forced to repeatedly reapply sun cream every two hours even while inside her home in Waterford, Connecticut, where in the summer months days are 15 hours long.
Fatima Perez, 54, has lived most of her life inside due to having Xeroderma Pigmentosum
Ms Perez grew up in the Dominican Republic. Her condition baffled her family, and her brother died of the same condition aged nine. Pictured on her 15th birthday
Even when Ms Perez is inside, she has to apply suncream every two hours to protect her skin
Born and raised in the Dominican Republic, the condition was a mystery to her family. Here, she lived exposed to the sun for 23 years.
She said: ‘The first thing I felt was a lot of itching and burning. At this point skin wouldn’t even grow on me.
‘Doctors told my parents that my disease was Xeroderma Pigmentosum. But they never told us that the sun could kill me.’
Her brother died of the same condition when he was nine, and feeling unsupported in her country, she left for the US.
‘Twenty-three years in the Dominican Republic and 11 in the US until I learnt how my condition works. That’s when I finally stayed out of the sun.’
On the rare occasions she has to leave her home, which has tinted windows and the blinds always down, she covers her entire body in protective attire that weighs around five pounds.
‘I put on a poncho made of two layers of the thickest denim covering me down to my knees’, she wrote on website XP Grupo Luz de Ezperanza, the charity she founded.
‘The hood attached to the poncho covers my face almost completely.
‘I wear dark wrap around sunglasses and a hat made of sun protection material with an extra large visor in the front.
‘Finally, I put on gloves to protect my hands… This outfit must be worn whenever I go outside, regardless of how hot the temperature is.’
When Ms Perez leaves her home, in Connecticut, USA, she must completely cover up with thick clothes, a hood and gloves. Pictured walking with her sister, shaded by an umbrella
Ms Perez has suffered a lifetime of skin cancer, and has lost her sight and hair
Ms Perez has had ‘hundreds of skin cancers’ removed from her whole body
Ms Perez must measure the light in a room with a special device
WHAT IS XERODERMA PIGMENTOSUM?
Xeroderma pigmentosum (XP) is an inherited condition that causes extreme sensitivity to UV rays from the sun.
It has been described as a ‘one-in-a-million’ condition.
XP is brought on by a genetic mutation.
Sufferers require complete protection from the sun, including clothing, sun cream and dark sunglasses.
Eighty-to-90 per cent of sufferers also experience:
- Joint pain
- Cognitive problems
- Teeth abnormalities
Due to sufferers being at high risk of sunburn, skin cancer is extremely common among patients.
There is no cure for XP.
Management of the condition includes protection from UV light, frequent skin examinations and prompt removal of any cancerous tissue.
Source: National Center for Advancing Translational Sciences
Ms Perez said: ‘From any kind of light like fluorescent light halogen light is the one that has the most ultraviolet rays.
‘Sometimes I can be under a light and not be able to see, I don’t notice it’s burning me.’
The disorder also means Ms Perez has suffered a lifetime of skin cancer.
She explained: ‘I have had hundreds of skin cancers removed from me from my whole body.
‘My feet, my thighs, my legs. Only in this leg from here to my feet I have had nine skin cancers removed.’
XP is caused when DNA in a cell is unable to repair itself after exposure to ultraviolet light.
Without this repair mechanism working, the skin is left vulnerable to radiation damage which could lead to both benign and malignant skin cancers.
Ms Perez carries a light meter wherever she goes, to measure how much UV light is in each source and determine whether she is safe to be near it.
XP has been described as a ‘one-in-a-million’ condition.
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