Sep 26, 2014

Deadly skin disease inflicts Moroccan teens

Rachel Woolf 0 Comment Photo essays, The Baltimore Sun, World and Driss Hamouti, Mohamed-El Kotbi, Morocco, Ouezzane, Tifelt, Xeroderma Pigmentosum, XP

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For 800 children in Morocco, damaged or burnt skin is genetic, irreparable, and needs to be replaced. Mohamed-El Kotbi, 17, and Driss Hamouti, 21, live with this tragic condition. Due to a disease called Xeroderma Pigmentosum – which medical professionals generally shorthand to XP – they are prone to blistering and burning of their skin and eyes upon the slightest sun exposure

: Driss Hamouti, 21, of Tifelt, Morocco. Hamouti’s lip is suffering with a tumor as a result from Xeroderma Pigmentosum, or XP. XP is a rare genetic condition making the skin and eyes sensitive to ultraviolet light. Rachel Woolf/Baltimore Sun

: From left, Wafae Hamouti hugs her brother, Driss Hamouti, 21, both of Tifelt, Morocco, as they watch a late afternoon movie. Driss’ lip is suffering with a tumor as a result from Xeroderma Pigmentosum, or XP. XP is a rare genetic condition making the skin and eyes sensitive to ultraviolet light. “Sometimes he hates himself, but then he forces himself to accept that God made him this way for a reason,Ó DrissÕ sister, Wafae, said. Rachel Woolf/Baltimore Sun

: Driss Hamouti, 21, of Tifelt, washes his face before re-applying a bandage to his lower lip, an area of his face suffering as a result from Xeroderma Pigmentosum, or XP. Rachel Woolf/Baltimore Sun

: From left, Zahir Bouten, 21, laughs with Driss Hamouti, 21, both of Tifelt, Morocco, during a soccer video game. Bouten and Hamouti have been best friends for 12 years. Rachel Woolf/Baltimore Sun

: From left, Driss Hamouti, 21, puts his arm around his best friend, Zahir Bouten, 21, both of Tifelt, Morocco, as they take a walk around Tifelt. “If he has somewhere to go, he will go. He doesn’t care,” said Driss’ sister, Wafae Hamouti, (not pictured). Rachel Woolf/Baltimore Sun

: Driss Hamouti, 21, of Tifelt, Morocco, glances at his phone next to the door in his room. While Driss spends time in his room, he opens the door but sits in the shade, sometimes to let air in the room. Rachel Woolf/Baltimore Sun

: From left, Driss Hamouti, 21, takes a late night walk with his friends, Zahir Bouten, 21, and Ahraf Farithi, 19, all of Tifelt, Morocco. Driss is free to walk around at night and hang out with his friends as he pleases; the sun is no longer an issue to his skin at night. Rachel Woolf/Baltimore Sun

: Driss Hamouti, 21, fights against Salahdine Aziz, 18, both of Tiflet Morocco, during Driss’ kickboxing class. Normally, Driss will spar with a boxing bag instead of with a person as he finds it more tiring to keep up with other people. Rachel Woolf/Baltimore Sun

: Driss Hamouti, 21, eats an early evening snack of pasta in his kitchen while his mom, Drissia El Ayouti, both of Tifelt, Morocco, gets food from the fridge to prepare dinner. Because of the tumor on his lip, Hamouti only eats in front of family and those he feels most comfortable with. Rachel Woolf/Baltimore Sun

: Driss Hamouti, 21, sits on his cousin Mimouna Boulgoualat’s, 17, lap while his sister, Wafae Hamouti, 27, all of Tifelt, Morocco, watches from the doorway as her brother and Boulgoualat attempt to connect their USB to receive Internet. “He [Driss] used to ask his cousins, why am I not like you? And they would tell him you’re not like me, you’re better,” DrissÕ sister said. Rachel Woolf/Baltimore Sun

: From left, Driss Hamouti, 21, of Tifelt, Morocco, looks up into the sun during an early evening walk with his best friend, Zahir Bouten, 21. Hamouti wears a hat and his protective sunglasses while in the sun, but continues to go outside, even without reapplying sunscreen or wearing a more protective garment. Rachel Woolf/Baltimore Sun

: Driss Hamouti, 21, of Tifelt, Morocco, puts a bandage on his lower lip, an area of his face suffering with a tumor as a result from Xeroderma Pigmentosum, or XP. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, has had two successful skin replacement surgeries for his Xeroderma Pigmentosum, or XP. XP is a rare genetic condition making the skin and eyes sensitive to ultraviolet light. Rachel Woolf/Baltimore Sun

: From left, Nadia El-Kotbi, 22, talks with her brother, Mohamed El-Kotbi, 17, both of the Province of Ouezzane, Morocco, about music while Mohamed takes a break from his math homework. Mohamed rents a room near his high school and spends weekends and holidays at his parent’s home. Rachel Woolf/Baltimore Sun

: From left, Mohamed El-Kotbi, 17, and his brother, Chouaib El-Kotbi, 20, both of the Province of Ouezzane, Morocco, walk through their village together. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, cuts and piles up grass for his family’s cows to eat. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, walks back to his house with his family’s donkey. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, prays during the morning prayer. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, works on homework late at night in his parent’s house. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, holds his pen over his notebook of raps. El-Kotbi recently started writing his own raps and wrote a rap about children with Xeroderma Pigmentosum. Rachel Woolf/Baltimore Sun

: Mohamed, 17, shares a laugh with his 100-year old grandmother, both of the Province of Ouezzane, Morocco, outside of his family’s house in the village. It only took a few seconds for the sun to appear and for the rest of his family to encourage him to move into the shade. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, looks up from his computer at his brother, Chouaib El-Kotbi, 20, and mother, Aziza Farashi, all of the Province of Ouezzane, Morocco. The El-Kotbi’s house has no roof in the center, leaving space for sunlight and trees planted by the family to provide shade for Mohamed. Mohamed suffers from Xeroderma Pigmentosum, or XP. XP is a rare genetic condition making the skin and eyes sensitive to ultraviolet light. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, dries his face off after washing it in late morning. People at his school have sometimes called him “burn face”. Rachel Woolf/Baltimore Sun

: Mohamed El-Kotbi, 17, of the Province of Ouezzane, Morocco, takes a break to sit down and look at the scenery surrounding his village in the shade. El-Kotbi is more active during overcast skies or in shady areas due to his skin condition, XP. Rachel Woolf/Baltimore Sun

According to the National Cancer Institute, there is a 10,000-fold increased risk of skin cancer for someone who has XP. The National Institute of Health reports a prominence of non-melanoma skin cancer at a median age of nine.

Most children, teenagers, and young adults who live with XP in Morocco, die before they reach 30 years old. For them, access to health care is a matter of life and death; hope and despair.

Mohamed El-Kotbi, 17, has had two successful skin replacement surgeries and has hopes for a professional future in physics, or hip-hop rap. One of his raps includes an image of heaven – a heaven of big clouds and soft shadows, and no more XP.

Driss Hamouti, 21, has not had any skin replacement surgeries and lives with a cancerous tumor on his face. He makes the best of his remaining days. Driss spends time with friends and family, loves cars and his pet turtle, and spends most of his daytime asleep.

His family treats his skin with homemade remedies – argon oil and honey lathering like lotion, and burnt strands of green grass, pressed firmly against areas of excess skin. Both Mohamed and Driss have come to terms with their condition. It is with God’s will, they say, that they were born the way they were.

“Driss used to ask why he was not like us,” says sister Wafae Hamouti, 27, “We would tell him, ‘you are not like us, you are better.'”

Article by Franny Krieger, photographs by Rachel Woolf

Deadly skin disease inflicts Moroccan teens

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