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.
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.