Posted by Karen - April 11th, 2010

Posted by Karen

Today I’m going to talk about Fibrodysplasia Ossificans Progressiva on television.  People with FOP have been on TV a number of times over the past several years.  Mostly it’s been on news or educational-type shows, but there was an occasion when a made-up character had FOP.

The fictional character appeared on an episode of Grey’s Anatomy.  It was on TV in the early spring of 2007; I think March.  I saw that episode, but get this – it was before my daughter Miranda’s diagnosis with FOP.  Just about a MONTH before…  In the episode, a woman with FOP was brought to the hospital.  She was middle-aged, and couldn’t move much at all because bone formation had locked her joints.  Her daughter, who didn’t have FOP, had to help her decide what medical treatment to get for internal bleeding (NOTE – not many actual woman with FOP have had children, but there have been at least 6 cases I’m aware of).

I recall seeing the Grey’s Anatomy episode when it was first on.  I thought, absent-mindedly, hmm, that’s sort of interesting, but when the episode ended I put it out of my mind.  Never in my wildest dreams did it occur to me that a month later, I’d find out my own child has that unbelievable disease…

On Mystery Diagnosis, the amazing and true story of Ashley Kurpiel was featured.  Mystery Diagnosis always goes the same way – a person has strange symptoms which stump doctors, and is eventually revealed to have a rare or unexpected medical condition.  In Ashley’s case, the episode began with a dramatization of her as a healthy 2 year old girl when her mother discovered a big lump on her right shoulder.  Doctors diagnosed cancer, and told her parents they had to operate immediately.  In the middle of surgery, the doctor came out and told her parents the cancer was spreading quickly, and that they’d have to amputate her entire arm and shoulder region.  Ashley recovered well from surgery, and it was believed that they had “got all the cancer out”, but then a few months later, a similar lump appeared on her left shoulder.  That time, fortunately, the correct diagnosis of FOP was made. 

At that time, about 25 years ago, physicians knew little about FOP, and Ashley’s parents were told, incorrectly, that she had 2 to 10 years to live.  Fast forward to 2009, when Ashley herself, still very much alive, finished up the Mystery Diagnosis episode by talking about her life as a young woman who is both an amputee and has FOP.  It made for compelling TV, and I think the show was very well done.

More recently, Ashley also appeared with her mother, Carol, a few weeks ago on The Tyra Banks Show.  Ashley and Carol briefly told their story, and then Ashley talked a bit about her life at present with FOP, and how she copes with one arm and joint fusions in her neck, back, shoulder and one leg.

2009 also featured FOP on The Today Show.  Little Joshua Scoble, who I believe was age 3 at the time, was interviewed with his parents.  They talked about Joshua’s experience, which ALSO involved surgery after misdiagnosis (though fortunately in this instance, no amputation).  Josh was such a cutie on that episode.  You could tell he really didn’t know what it was all about – fair enough, he was only 3 – and I recall that he asked some sort of question about the stage lights or the audience.

A young woman named Holly Pullano appeared recently on a show on the National Geographic channel called “Rare Anatomy”.  That episode was great providing a more scientific explanation of FOP and how it works.  However, Holly’s own experience was also discussed. 

To me, Holly’s is another interesting case.  The intriguing feature of Holly’s story, as far as I’m concerned, is that she made it almost entirely through her childhood before FOP reared it’s ugly head.  She had all the usual childhood experiences – sports, dancing, running, bumps and bruises, and none of it led to FOP flare-ups…  Until she was 16 years old.  On the show, Holly described trying out for a basketball team when she realized her neck was sore.  Within the next several weeks, she developed FOP flare-ups in numerous locations on her body.  Fortunately for her, the correct diagnosis came pretty quickly.

Holly didn’t talk on the show about how it affected her to find out about FOP, but I often think it must have been an extremely difficult time.  Most people with FOP become symptomatic and get diagnosed at a much earlier age, and they grow up with their parents explaining FOP to them on a “need to know” sort of basis.  For such kids, they come to understand FOP gradually over time, and “ease” into its significance over a long period.  But Holly, on the other hand, was for all intents and purposes an adult when diagnosed.  It must have been a singularly challenging experience, but Holly is an incredible and admirable young woman, so she must be made of very strong stuff indeed.

Finally, the last bits I wanted to tell you about were on German TV.  There’s a fabulous guy in Germany called Roger Zum Felde, and he’s one of my favourite people in the FOP community.  Roger is in his 40s, and I believe he has motion left only in one of his arms.  Despite tremendous physical limitations, Roger is a tireless advocate for people with FOP and other disabling conditions.  Roger has been interviewed on German TV about FOP on at least one occasion, maybe more.  Roger has a razor-sharp wit, and he and a friend (who is not disabled) also did a very funny clip in which their intent was to demonstrate the difficulties people in wheelchairs have navigating around their home city.  Roger, in his electronic wheelchair, was done up like Don Quixote, but every time he’d want to go somewhere to battle for justice, he’d be thwarted because he was unable to get his chair down stairs or up over curbs. ;-)

Various other people have also discussed FOP on TV.  The indefatiguable Marie Hallbert has been on news shows a couple of times to talk about FOP.  Also, I understand that a young woman named Astrid (I don’t have her last name) is going to be appearing shortly on a Dutch TV show called “Jong”.

Kudos to all of these folks who’ve bravely stepped up to the plate and done their best to spread awareness of FOP.

One Response to “FOP on TV”

  1. Helen Munro says:

    Very good blog, Karen.

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