Orzel died in February 2018 at age 58, and this week, she got her wish. Her skeleton, along with a collection of tiaras, earrings and brooches from her extensive costume-jewelry collection, is on display at the Mütter, along with information about the course of her condition and its effects.

FOP is one of the rarest diseases in the world. Only about 900 people have been diagnosed with it. The mutation of a single nucleobase out of 6 million in a person’s DNA causes ribbons, plates and sheets of bone to cross the joints and lock them up, making movement impossible.

At birth, the only visible sign of FOP is what looks like a bunion in the big toe; it is, in fact, a malformation of the joint. Between the ages of 2 and 5, painful swellings that look like tumors begin to emerge on the neck and back and then slowly transform into bone. Any attempt to remove bone can cause a joint to lock permanently, as can immunizations or other injections.

“It’s normal bone,” said Kaplan, who treated Orzel for more than 30 years. “It just shouldn’t be there. It’s an example of too much of a good thing.”

As the disease progresses, it affects the upper limbs, then the lower limbs in adolescence, and eventually in adulthood it affects the jaw, elbows, knees, and wrists. By the time patients reach their 40s, very little if any mobility is left.

In her later years, Orzel had only some mobility left in her wrists and fingers.

Bone doesn’t form within organs, but because of the constrictions of bone around the chest wall, it makes it hard for the chest to expand.

“So the heart has to pump for a lifetime against a chest that doesn’t expand,” Kaplan said, “and eventually the heart gets tired.”

Most patients succumb to heart and lung problems, and that was the case with Orzel.

A need for speed

When she died, the museum was in a race against time. It had a matter of days to transport and transform the body into a skeleton.

“Carol is fully fused, so her body couldn’t be disarticulated first and rendered into a skeleton, and then rearticulated,” said Mütter Museum curator Anna Dhody. “She is one unit.”

The only place in the country that was able to take on the task was Skulls Unlimited, which traditionally deals with animal skeletons of the type on display in a natural-history museum. But that company is based in Oklahoma, so the museum had to factor in transportation, paperwork, and logistics, along with a special case to transport the body.

“I can’t articulate how delicate her bone is,” Dhody said. “It was almost like taking cotton candy and hairspray.”

Aside from FOP, which caused bone to grow where it shouldn’t, Orzel also dealt with the bone loss that afflicts many women in their 50s, so some of her bone was nearly translucent. It was even more fragile when the skeleton was transported back to the museum. Skulls Unlimited provided a white-glove service, with a custom padded crate. Orzel’s skeleton was driven all the way from Oklahoma to the museum in Philadelphia, where it was stored until a new case and exhibit space was completed to display it with Eastlack’s.

With about 180,000 visitors to the museum each year, Dhody hopes exhibiting both skeletons will broaden public knowledge and understanding of the disease.

“She’s going to be able to impact a much broader and much greater number of people to learn about the condition,” Dhody said. “We want to explain that the more we know about how bone grows where it’s not supposed to grow, it can help a wider variety of people than just the 900 people with FOP.”

A passion for education … and Philly