Philadelphia, PA—Carol Orzel, a local woman who passed away last year from a rare bone disease, has donated her skeleton to be permanently displayed at the Mütter Museum. The museum revealed her skeleton in a new exhibit on February 28.
Carol lived with Fibrodysplasia Ossificans Progressiva (FOP), one of the rarest diseases in the world, which causes the body’s soft tissues to ossify (or harden) and turn into bone. Carol passed away in February 2018 at the age of 58. Since 1982, Carol had been a resident of Inglis House, the 143 year-old long-term care community for people with physical disabilities.
The Mütter Museum, America’s premier museum of medical history, has housed the skeleton of Harry Eastlack (1933-1973) since 1979; he is considered the most-recognized FOP case and also a former resident of Inglis House. Before Harry died, he requested that his body be used to help understand more about his disease. Harry’s skeleton has helped to unlock many of the mysteries of this rare disease.
Carol’s final wish was also to donate her body to the Mütter Museum to be displayed next to Harry. Though Harry and Carol never met in life, after Carol saw Harry’s skeleton in 1995 at an International FOP Association conference in Philadelphia, she spoke for years about her desire to “hang next to Harry at the Mütter Museum.”
A new exhibition will include both Carol and Harry and contain facts about FOP with additional information about their histories. Carol was an avid costume jewelry collector with more than 100 pieces, including tiaras, earrings, and brooches. Some of her jewelry will be displayed in the exhibit as per her request.
The Life and Legacy of Carol Orzel
Carol Ann Orzel was born on April 20, 1959 and was diagnosed with FOP as a child. In 1982 she moved to Inglis House, a specialty long-term care community in Philadelphia for people with physical disabilities, where she lived for the remainder of her life. Carol was extremely active in the FOP community. She advocated for more research, established networks of communication with others with FOP, and educated both the public and medical professionals about the disease.
Dr. Frederick Kaplan
Carol’s doctor, Frederick S. Kaplan, MD, at the Perelman School of Medicine at the University of Pennsylvania, is the leading FOP researcher. Dr. Kaplan worked closely with Carol. He co-directs the only center in the world devoted to the study of FOP. Dr. Kaplan is a Fellow (elected member) of The College of Physicians of Philadelphia, which operates and houses the Mütter Museum.
“Carol was an advocate of medical education— and played a seminal role in educating nearly three generations of medical students at the University of Pennsylvania— often meeting them, lecturing to them during their genetics course, sharing her story on their very first day of medical school, and earning a standing ovation from more than 150 students in each class, year after year,” Dr. Kaplan said in his remarks at Carol’s memorial service.
What is Fibrodysplasia Ossificans Progressiva?
People who have fibrodysplasia ossificans progressiva (FOP), an ultra-rare and disabling genetic disease, form two skeletons — a primary one like everyone else and a second one created from their skeletal muscles and other connective tissues. FOP affects approximately one in two million people. About 900 people in the world have been diagnosed with FOP.
FOP is caused by a gene mutation that transmits incorrect signals in cells and transforms soft connective tissue (such as muscle, ligaments, and tendons) into bone. This formation of bone where it is not supposed to be is called heterotopic ossification (HO). FOP is difficult to diagnose at birth because there are no visual signs except for malformed big toes. Diagnosis usually occurs after the body begins creating extraskeletal bone, often following an injury or a viral infection.
No racial, ethnic, sex, or geographic preferences are seen in people with FOP. Because of its rarity and early tumorlike symptoms, FOP is often misdiagnosed, usually as cancer. FOP is deadly; the median estimated life expectancy is 56 years. Most FOP deaths are caused by cardiorespiratory failure due to fusion of the rib cage. In 2006, a research team at Penn identified the genetic mutation that causes FOP in all affected people. No cure or effective treatment exists, however, as of 2019, three drugs are in clinical trials.
The Importance of Researching Rare Diseases
There are an estimated 7,000 rare diseases and 25 to 30 million Americans living with a rare disease. By identifying the genes that cause rare diseases, we improve the understanding of our genetic selves and the processes that regulate health and disease.
For example, Heterotopic Ossification (HO), when bone tissue develops outside of the skeleton, is a growing area of concern and study because it affects many people who’ve had hip replacements as well as many military veterans who were in injured in Iraq and Afghanistan. Through researching the rare disease of FOP, doctors and scientists hope to be able to better treat the more-widespread HO.
About the Mütter Museum and The College of Physicians of Philadelphia
The College of Physicians of Philadelphia was founded in 1787 by a group of physicians including Dr. Benjamin Rush, a signer of our nation’s Declaration of Independence. The College is a not-for-profit educational and cultural institution, with the mission of advancing the cause of health while upholding the ideals and heritage of medicine.
The College is home to the Mütter Museum, America’s finest museum of medical history, which displays collections of anatomical specimens, models and medical instruments in a nineteenth-century setting. This includes slides of Einstein’s Brain, the 139 skulls from Hyrtl’s collection, and a biannual rotation of art exhibits that accompany the themes and aims of the museum’s collections.
The Mütter Museum helps the public appreciate the mysteries and beauty of the human body while understanding the history of diagnosis and treatment of disease.