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• 1 2022-01-31T17:10:19-08:00 Meet Carol 51 image_header 1128143 2022-04-21T19:31:06-07:00 Carol Orzel was 59 when she died in 2018. She was born with a bone disease called Fibrodysplasia ossificans progressiva: FOP, for short. Her connective tissue—muscles, tendons, ligaments—was slowly turning into bone. FOP affects about one in two million people worldwide, making it extremely rare. Unfortunately, FOP’s progression makes it a fatal condition, and during Carol’s lifetime there was no treatment. She knew that her body would be valuable to scientists who are researching a treatment to help people born with FOP in the future, as well as to many people with no medical training at all, as an educational resource to help them learn about rare diseases and think about the still-living people who are affected.
  
  
  In life, Carol was an exuberant and joyful woman known for her meticulous makeup and large jewelry collection. In fact, Carol loved her jewelry so much that she made the display of all 167 pieces of it one of the conditions of her donation to the museum! Originally, both Carol and the Museum curators had hoped to display some of the jewelry directly on her skeleton. In the end, FOP made her skeleton too delicate to be able to move forward with that plan, and the jewelry is instead displayed in a separate case next to her remains. The pieces in the case are periodically rotated out so that every single item in her collection will be on view at one point or another. It is the Museum’s hope that by looking at these gorgeous, quirky, fun pieces of her collection, visitors will be better able to imagine who Carol was when she was alive, and recognize that her remains are just one part of what this incredible and very real human being left behind.
  
  
  Carol also wanted to be with Harry Eastlack, a man who Carol had never met, but who also had FOP. His skeleton has been on display at the Mutter Museum since 1973 and ever since her first visit to see that skeleton, Carol had been enchanted with Harry’s “life after death” as a museum exhibit. That’s how she knew that a similar resting place would be right for her.
  
  
  Despite Carol’s enthusiasm for donating her body to the Museum, she didn’t actually prepare the museum or a legal team to facilitate the donation. The fact that she also had a specific place that she wanted to donate to, rather than making a general donation to the state’s body donation program, necessitated further arrangement. Thankfully Carol had been vocal about her wishes and even appeared on video explaining what she wanted to happen to her body after her death.
  
  
  Almost a full year after her death, Carol’s skeleton went on display at the Mutter Museum on Rare Disease Day in 2019. She’ll stay there for the foreseeable future, exactly where she had hoped to be—hanging up, next to Harry.
               
  
  Learn more about Carol from Anna Dhody, the curator at her museum: