Join us in welcoming Carol Orzel to the Museum! Carol lived with Fibrodysplasia Ossificans Progressiva (#FOP), a rare genetic condition that slowly immobilized her body, but not her spirit. To learn more about FOP: https://t.co/n9z51qckgC#RareDiseaseDay
— Mütter Museum (@MutterMuseum) February 28, 2019
We’ve posted a couple of items concerning fibrodysplasia ossificans progressiva (FOP), a rare disease in which one’s body tissues turn to bone. Carol Orzel of Philadelphia suffered from FOP, and had visited the city’s Mutter Museum, where the only preserved skeleton of an FOP victim, that of Harry Eastlack, is on display. Orzel wished that when her time came, her skeleton could join him in the exhibit. Orzel died a year ago at age 58, and her skeleton went on display this week at the museum.
The Orzel installation comes at a crucial time for the ultra-rare disorder, known to afflict a few thousand people worldwide. When Eastlack died at age 39 in 1973, FOP research was nonexistent. Now, it has spawned an industry. Several potential therapies are in clinical trials, and dozens of companies are racing to exploit new insights that could transform the treatment not only of FOP, but of head trauma, fractures, bone malformations, osteoporosis, joint replacements, and much more.
The turning point came in 2006, when a University of Pennsylvania team discovered the genetic mutation that causes FOP. The team was led by Frederick Kaplan, 67, a Penn professor of orthopedic molecular medicine.
His rise to become a preeminent FOP researcher began with Orzel.
“Although I had read about FOP, I had never seen anyone with it until I met Carol in 1984,” Kaplan said Thursday at the unveiling. “From the moment I met her, she was unforgettable – witty, charming, and in charge.
Read about Orzel’s life and her contributions to Kaplan’s breakthrough at the Philadelphia Inquirer. See more pictures from the exhibit at National Geographic.