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]
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 |
Early life
editOrzel 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
editAfter 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]
Donation of skeleton to Mütter Museum
editIn 1995, Orzel saw the skeleton of Harry Eastlack, a famous patient of FOP, at an IFOPA conference. The skeleton was on loan from the Mütter Museum, and Orzel decided that after she died, she wanted her skeleton to be displayed with Eastlack's, on the condition that her jewelry was displayed too. When Orzel died at the Hospital of the University of Pennsylvania in 2018, Kaplan and executives from Inglis House contacted the Mütter Museum. Curator Anna Dhody oversaw the project. Due to the FOP and other illness, Orzel's body was very delicate and difficult to transport and prepare. Her body was transported from Philadelphia to Skulls Unlimited in Oklahoma City for processing. Orzel's skeleton and her jewelry went on display in the Mütter Museum in February 2019.[5][1]
References
edit- ^ a b c d McCullough, Marie (28 February 2019). "New Mütter Museum exhibit grants final wish for woman who turned to bone". Philadelphia Inquirer. Archived from the original on June 7, 2019.
- ^ a b "Mütter Museum Reveals New Exhibit: Philadelphia Woman's Skeleton With Rare Bone Disease". The Mütter Museum. 5 March 2019. Archived from the original on March 25, 2019.
- ^ Pinkowski, Jen (1 March 2019). "Here's what happens when your body tissues turn to bone". National Geographic. Archived from the original on February 19, 2021.
- ^ McCullough, Marie (2019-02-28). "Therapies in sight for FOP, a disease that turns muscle to bone". Philadelphia Inquirer. Archived from the original on 2022-02-28.
- ^ Bate, Dana (2019-02-28). "Philly woman with rare bone disease donates skeleton to Mütter Museum". WHYY. Archived from the original on 2022-04-18.
External links
edit- Video about Orzel by the Mütter Museum