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Don’t Hide Your Face

Shlomi Gil

“Don’t worry, a lot of people recoil when they see me,” he says with a gentle smile to put us at ease

Wednesday, September 13, 2017

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SPACESUIT FOR AN EARTHMAN When Raphi was 14, he received assistance from a surprising source: NASA. “NASA has special space suits for their astronauts that protect them from radiation when they go on space missions. It was a long shot, but maybe they could make something for me” (Photos: Ezra Trabelsi, Family archives)

T his wasn’t an easy interview to conduct: not because the subject wasn’t forthcoming — in fact, he was personable and articulate; or that he had something to hide — actually, he was extremely open about his condition. The problem was with me and my own discomfort — during the first few minutes, I wasn’t sure what to do with myself as I sat facing a man with a most unusual appearance.

Despite the brutal Bnei Brak heat, my host was wearing several layers of clothing one on top of the other, with tzitzis peeking out from beneath the garments. His hands were covered in special, fully opaque gloves.

At first, his face was hidden, covered with a full head mask that provided total concealment. But after we got settled, the door closed and the windows completely shuttered from letting in any rays of sunlight, Raphi Strauss was finally able to take his mask off and smile.

Raphi’s face looks like a map of the years of suffering he has endured. Its lines tell a story of hundreds of operations, the removal of various growths, the cheekbone that he was forced to give up, and the plastic surgeries and countless painful challenges he’s had to cope with since childhood.

“Don’t worry, a lot of people recoil when they see me,” he says with a gentle smile to put us at ease.

"The doctor told me that I would enter surgery looking like a creation of G-d but I would emerge looking totally different”

As Raphi began to relate his life story, his battered face no longer mattered. The inner strength, emunah, and personal heroism in overcoming the challenge and suffering overshadowed the disfigurement.

For the last year and a half, Raphi Strauss, 31, has been living in Bnei Brak — closeted indoors during the day and emerging only at night, never venturing outside without The Mask. When he was living in Teaneck, and then in Monsey, his friends and neighbors had gotten used to the scene of the young man with the rare genetic condition, for whom any bit of the sun’s warming rays could be fatal. Today when he ventures out onto Rabi Akiva Street or the Itzkowitz minyan factory, all eyes are on him as he dons the body coverings reminiscent of a beekeeper.

Raphi Strauss’s odyssey began the day he was born in a Haifa hospital. “I was a preemie,” he says, “and somehow the strong fluorescent lights in the incubators ‘cooked’ me,” Raphi says. The doctors quickly removed the beet-red newborn from the lights, but that was just the beginning. Sitting in the sun several months later, baby Raphi looked like he was roasting. By the time he was 11 months old, doctors determined he was suffering from some rare skin condition that was aggravated by sunlight, and that he should always wear a hat outdoors, both summer and winter.

But a few months later, his mother Iris discovered that her son had two small growths on his body. Finally, a specialist at Beilinson Hospital was able to give a name to the rare condition: xeroderma pigmentosum, or XP for short — a rare genetic illness in which the slightest exposure to radiation or to the sun’s UV rays can cause the rapid development of cancerous growths on the skin — growths that can develop in mere hours and which, if not immediately removed, can be lethal. (Excerpted from Mishpacha, Issue 677)

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