Tuesday, April 23, 2013
Wearing green for FOP!
Today I'm wearing green, and my green silicone bracelet from Ali's Army! Ali is a young girl in America living with the very very rare condition FOP or Fibrodysplasia Ossificans Progressiva which basically means her muscles and connective tissue is slowly but surely turning into bone and will eventually, unless a cure or treatment is found, make her entire body rigid. It is a very painful and disabling condition and very little is known about it, much due to how rare it is.
Surgery to remove bone? Sadly it tends to trigger more bone growth rather than easing the problem, even a light bump against the body can trigger an inflammation and cause more bone growth. FOP is one of the rarest conditions known to man and more research and awareness is needed to help those who are affected.
To learn more about FOP, please visit http://www.ifopa.org/what-is-fop/overview.html educate yourself, wear green and spread the word!
To support Ali's Army, visit http://www.alis-army.org/
I joined the fight! Have you?
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Thanks for writing about FOP, here is another blog that might be interested for you to read.
ReplyDeletehttp://elinpastej.blogspot.se/
You're most welcome :) I'll check it out! :)
DeleteHey lady! My cousin actually has this and America has another orange and white bracelet for it :) Glad for all the awareness going around. She's had it since she was about 14 so around 8 yrs...She's had MANY surgeries because of it, but she's a fighter! Thanks for sharing. Here's the facebook group site. https://www.facebook.com/groups/fibrous.dysplasia/?fref=ts
ReplyDeleteThe more rare a condition is, the more important it is to raise the word about it! When doctors hear hoof beats they expect a horse, not a zebra. FOP and many other conditions, including EDS which I have, are zebra diagnoses ;)
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