UCSF starting world’s 2nd center on rare disorder that causes crippling bone growth. It sounds like a cross between a Greek myth and a horror movie. Instead, it’s a rare affliction that turns muscle into bone and people into statues. Fibrodysplasia ossificans progressiva strikes an estimated 1 in 2 million humans, and there are just 600 known cases in the world -- 25 of them in California, where a new center has opened in San Francisco to demystify FOP and help anyone who has it. “It is the cruelest disease that I’ve encountered,” said orthopedist Frederick Kaplan, an expert on FOP. “It imprisons people. It’s like a molecular terrorist attack.” Some people with FOP are frozen forever into unwieldy positions -- U- shaped, arms folded, legs crossed, bent sideways. Others can’t stand, while still others can’t sit. “Basically, I’m like a piece of wood,” said 49-year-old Sandi Lee, who lives in the San Bernardino County town of Apple Valley and has spent 20 years in bed. “I don’t bend from my head to my foot.” Once, to her dismay, she was mistaken for a mannequin. Most FOP research -- which could benefit people with more common bone ailments, such as arthritis or osteoporosis -- is being done in Kaplan’s lab at the University of Pennsylvania in Philadelphia. And now, in San Francisco, the world’s second consultation center on FOP is taking shape. The center was inspired by Dr. Joseph Kitterman, a neonatologist at UCSF. More...
