January 15, 2014
Mohenjo
Medical
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Saturday night could have been a moment for Sam Berns to celebrate — standing in the middle of Gillette Stadium, flanked by some of his beloved New England Patriots, and no doubt cheered heartily by the nearly 70,000 fans surrounding him.
But it wasn’t to be.
Instead of having Berns as an honorary captain in their NFL playoff with the Indianapolis Colts, the Patriots held a moment of silence for the young man who inspired them and many others as he lived with progeria, which causes premature, accelerated aging.
“Do it for Sammy!” one man yelled, piercing the quiet, in video of the ceremony on Boston.com.
Berns died Friday evening due to complications from the rare genetic disease, according to the Progeria Research Foundation.
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February 26, 2013
Mohenjo
Medical
75% of her body covered in painful open lesions, amazon, blisters from her scalp to her feet, business, classmates, CNN, connective tissue disorder, corneas, EB, epidermolysis bullosa, genetic disease, Health, Her corneas are scratched, her esophagus is lined with scar tissue, Her toes are fused together, Hotels, lesions, medicine, open lesions, rafi, Rafi Kopelan, Rafi Kopelan is a typical 5-year-old, Rafi's body is covered in blisters, research, scar tissue, Science, Science News, she can barely swallow, She's learning to read, She's mastered Candyland, technology, Technology News, travel, vacation
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Rafi Kopelan is a typical 5-year-old. She’s mastered Candyland. She’s learning to read. Given a choice, she’d spend hours on the swings at the playground.
But unlike her classmates, Rafi’s body is covered in blisters from her scalp to her feet. Her corneas are scratched. Her toes are fused together. And her esophagus is lined with so much scar tissue that she can barely swallow.
That’s because Rafi was born with a rare connective tissue disorder called epidermolysis bullosa (EB). The genetic disease causes her skin to break down in response to the slightest friction. Even minor contact — the scratch of a fingernail, the tag on the back of her shirt — causes her skin to tear or to erupt in blisters, leaving 75% of her body covered in painful, open lesions.
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http://www.cnn.com/2013/02/23/health/rafis-run/index.html?hpt=he_c2
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