Carol Orzel
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Carol Orzel | |
|---|---|
| Born | April 20, 1959 |
| Died | February, 2018 (aged 58) Philadelphia, Pennsylvania |
| Cause of death | Complications from FOP |
| Known for | Disability activism, advocacy for the study of fibrodysplasia ossificans progressiva |
Carol Orzel (April 20, 1959 – February 2018) was an American woman with fibrodysplasia ossificans progressiva (FOP). She advocated for research into FOP and was an activist for disability rights. Before her death, she requested that her skeleton be displayed in the Mütter Museum.[1]
Orzel was born in Philadelphia in 1959 and diagnosed with FOP, a rare disease that causes tissue to ossify. In 1982 at age 23, she moved to Inglis House, a nursing-care facility, at its Belmont Avenue campus.[2][1]
Advocacy and association with University of Pennsylvania
After moving to Inglis House, Orzel became a patient of doctor Frederick Kaplan at the University of Pennsylvania. Kaplan had never before met someone with FOP, and the disease would become his focus. Orzel gave annual talks to incoming medical students at University of Pennsylvania to help them better understand treating people with disabilities. The Mütter Museum notes that she "advocated for more research, established networks of communication with others with FOP, and educated both the public and medical professionals about the disease."[2] She was involved in the International FOP Association, or IFOPA, and cut the ribbon at the opening of UPenn's FOP Research Laboratory.[1][3] It was this laboratory where the gene that causes FOP was discovered in 2006.[4]