National Geographic

The Girl Who Turned to Bone: My New Feature for the Atlantic

Skeleton of Harry Eastlack at the Mutter Museum. Courtesy: © A.B. Shafritz et al., New Eng. J. Med., 335 (8): 555-61, 1996, Source: http://www.uphs.upenn.edu/news/news_releases/apr06/briefing210406.htm

Skeleton of Harry Eastlack at the Mutter Museum. Courtesy: © A.B. Shafritz et al., New Eng. J. Med., 335 (8): 555-61, 1996, Source: http://www.uphs.upenn.edu/news/news_releases/apr06/briefing210406.htm

Over the past year or so I’ve gotten to know some extraordinary people. They were born with a single mutation to a single gene that caused them to grow a second skeleton. Their condition, called fibrodysplasia ossificans progressiva, affects only one person out of every two million. If you traveled across the entire the United States and gathered everyone with the condition, you could fit them all comfortably on a single Greyhound bus.

I was inspired to meet them on a visit to Philadelphia last summer. The Mutter Museum, housed at the College of Physicians and Surgeons, is a collection of medical specimens of the sort you will see nowhere else in the United States. You feel an alternation of fear and exaltation at all the ways that the human body can be transformed. In one corner of the museum was the skeleton of a man named Harry Eastlack, who asked that his body be donated to science so that his disorder might someday be understood.

Looking at his skeleton, I wondered how on Earth something like this could happen, and what on Earth it was like to experience something like this. The result is the longest feature I’ve written in some time, which appears in the June issue of the Atlantic. You can read it here.

There are 7 Comments. Add Yours.

  1. Physicalist
    May 23, 2013

    Fantastic piece. Thanks for writing it.

  2. Serge D.
    May 23, 2013

    Rare disease are the future of clinical research. Pharmaceutical companies have almost no incentive to face that challenge. Hopefully, funding will be increased to benefit those 25-30 millions americans that suffer from rare diseases. I suspect that once genomics becomes common, many more rare diseases will be described. What will we do when most of us will be found to have subsets of rare mutations causing all kinds of rare diseases?

  3. BPM
    May 24, 2013

    The aspect of rare diseases like this offering peeks at hidden processes is very interesting.

  4. Kathy K.
    May 25, 2013

    Thanks for this fascinating article!
    Kudos to Peeper for being a truly inspirational person!
    Also, thanks to all the dedicated doctors and scientists that have worked so hard to try and figure out the mysteries of FOP.

  5. Valerie Orr
    May 26, 2013

    I remember Jeannie very well from when I worked with her at her home as her occupational therapist many years ago. It’s good to hear she is still the same dynamo lady who lets nothing stop her from her mission & to hear that her efforts are paying off. More power to her!

  6. Jesse the K
    June 7, 2013

    The article was well-written and informative. People with disabilities organized to improve our situation can be awesome!

    I was disappointed by some of your word choices. FOP can trap someone, and destroy their mobility. A wheelchair, on the other hand, returns some of that mobility. The largest drawback to using a wheelchair is dealing with the fear and assumptions of people who assume we’re “trapped” in a “hulking” machine.

    You’re not trapped in your glasses or bound to your hiking boots. Accord us the same dignity, please.

  7. Aaron Funmi
    September 4, 2014

    Hav been sufferin from this since i was ten…but everything i read says from birth,mine wasnt from birth. Now am 21Years old and gettin worst.i just hope i’ll find a cure.

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