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I have FOP, and BBC’s medical drama show ‘Casualty’ last night featured a storyline on FOP.
I wasn’t impressed by the synopsis days ago – it was really ‘FOP Character with FOP is stuck between a rock and a hard place, can’t tell her fiancé she has FOP because she thinks he will find her untouchable, & can’t get her collapsed lung fixed either because she is stubborn’.
It aired a few hours ago and the verdict isn’t good. Other FOPers and non-FOPers on Twitter and Facebook alike are also confused and distressed. I am scared to watch it because it sound so offensive and upsetting. 🙁 Has anyone watched it?
I’ve been told that the writers ruined it – they did not explain the condition, the complications, the symptoms, the lack of treatment, anything! The doctor characters supposedly knew what FOP was when the patient only mentioned the name. FOP affects 1 in 2 million people world wide, it is one of the rarest conditions, and hardly any professionals know about it. Doctors I talk to sometimes think I am joking about my condition when I have to go see a new one.
The biggest error was that they compared and likened it to arthritis.
That is unbelievable and horrifying, as an FOPer. FOP is NOT treatable, an ailment, manageable, or non-disabling or non-life threatening. It is not arthritis.
In reality, FOP causes a second skeleton to grow and turn tissue, tendons, muscles to bone. Anything can trigger a flare up – bruises, trauma, surgery, dental work, needles, bumps, falls,viruses/colds/infections/flus, or because of no discernable reason. Serious life-saving emergencies like trauma, broken bones, pneumonia or a collapsed lung, and we are in deep, deep trouble.
Most of us are bedridden or wheelchair bound by our teenage years, usually earlier around the age of 2-8 years, our jaws lock up too so speech is very difficult if not possible at all. Life expectancy is 40 years.
This character was apparently flareup free and able bodied in her middle age years. She had pneumothorax but was still… well, comfortably breathing, healthy, and worried over her marriage.
Never heard of the show, but it sounds just like TV to take something serious and 1.Be misinformed 2. Stereotype and 3.treat it lightly and half heartedly. Like you said-the character SHOULD have been very sick and possibly disabled in some way but she was acting as if she didn’t have the condition. I think every minority group has been through this at one time or another. Honestly, it’s TV. If it offends you, don’t watch it and don’t worry too much about it. I find torture to be very offensive. The SAW movies are horrible, despicable, and I can’t believe there was a human being sick enough to think of the concept. But, I don’t watch the movies and don’t support them in anyway. I also recommend to anyone that they never ever see them. That’s just me though.
Or, if you are worried, write the TV show and contact them on all their social media sites. If anything, I think it draws attention to a very rare condition. I’ve heard of it before (I’m an x-ray tech) but didn’t recognize it by the abbreviation. So in a way, it’s creating awareness 🙂Yeah, it’s done some good as Ifopa and other FOP orgs have gotten donations and enquiries, however we are all concerned with how they downplayed it and gave false information. 🙁
Like, they gave the impression that FOP amounts to a benign lump. No disability or life threatening complications. Or how most FOP cases are diagnosed through misdiagnosis of limb amputation, mistaken for cancer, so it’s horrifying that some people who watched it now believe FOP is relatively harmless.
Sir Stephen Fry had signal boosted his video on FOP to overtake the BBC blunder so that is also good news!
A fellow FOPer gave me the rundown of the episode, it sounded terrible in other aspects; the FOP girl apparently was walking around and such with a collapsed lung. Casualty sounds like they don’t do ANY research, which is funny because they contacted FOP Friends for help with their character!
I think it might be pretty common for a medical TV show to mess up the facts about a condition. About a year ago I heard about a similar mistake, a show’s episode which featured asexuality and messed it up horribly. (I can’t remember which show mind you.) People in the ace community were pretty furious about that because it’s very rare that asexuality is mentioned anywhere, especially in pop culture but this mess up with FOP is definitely far worse. You can’t run into big trouble being misinformed about asexuality like you can with something like FOP. 🙁
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Excellent!
Yeah 🙁
No doctor worn their salt will ever take a sitcom seriously, mind you I have met some in person who, even after reading my files and chatting to others, don’t believe my condition 100%, but we are concerned over parents and newly diagnosed patients and potential ones who think ‘oh, this will be okay’. Discovery Channel or NatGeo, I forget which did it, once did a FOP episode but sensationalised it, using the unforgiveable term ‘Medusa Syndrome’.
I wish producers would take research seriously, and not turn it into a shock value trip or a freak show.
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