Carol Orzel (April 20, 1959 – February 2018) was an American woman with

fibrodysplasia ossificans progressiva Fibrodysplasia ossificans progressiva (; FOP; also called Münchmeyer disease and formerly called myositis ossificans progressiva or Stoneman disease) is an extremely rare connective tissue disease in which fibrous connective tissue such as mus ...

(FOP). She advocated for research into FOP and was an activist for

disability rights The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all people with disabilities. It is made up of organizations of disability activists, also known as disability advocat ...

. Before her death, she requested that her skeleton be displayed in the

Mütter Museum The Mütter Museum is a medical museum located in the Center City area of Philadelphia, Pennsylvania. It contains a collection of anatomical and pathological specimens, wax models, and antique medical equipment. The museum is part of The Coll ...

Early life

Orzel was born in Philadelphia in 1959 and diagnosed with FOP, a rare disease that causes tissue to

ossify Ossification (also called osteogenesis or bone mineralization) in bone remodeling is the process of laying down new bone material by cells named osteoblasts. It is synonymous with bone tissue formation. There are two processes resulting in th ...

. In 1982 at age 23, she moved to Inglis House, a nursing-care facility, at its Belmont Avenue campus.

Advocacy and association with University of Pennsylvania

After moving to Inglis House, Orzel became a patient of doctor

Frederick Kaplan Frederick S. Kaplan is an American medical doctor specializing in research of musculoskeletal disorders such as fibrodysplasia ossificans progressiva (FOP). Education Frederick Kaplan received a bachelor's degree from Johns Hopkins University in ...

at the

University of Pennsylvania The University of Pennsylvania (also known as Penn or UPenn) is a private research university in Philadelphia. It is the fourth-oldest institution of higher education in the United States and is ranked among the highest-regarded universitie ...

. 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." She was involved in the

International FOP Association The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a US-based 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia ...

, or IFOPA, and cut the ribbon at the opening of UPenn's FOP Research Laboratory. It was this laboratory where the gene that causes FOP was discovered in 2006.

Donation of skeleton to Mütter Museum

In 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 The Hospital of the University of Pennsylvania (HUP) is the flagship hospital of Penn Medicine and is located in the University City section of West Philadelphia. It is consistently ranked as one of the top hospitals in the United States. Histor ...

in 2018, Kaplan and executives from Inglis House contacted the Mütter Museum.

Curator A curator (from la, cura, meaning "to take care") is a manager or overseer. When working with cultural organizations, a curator is typically a "collections curator" or an "exhibitions curator", and has multifaceted tasks dependent on the parti ...

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.

References

External links

Video about Orzel
by the Mütter Museum {{DEFAULTSORT:Orzel, Carol 1959 births 2018 deaths People from Philadelphia American disability rights activists Fibrodysplasia ossificans progressiva