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A handful of weeks ago, I came back from a vacation in Las Vegas thirsty the entire flight home. I proceeded to purchase and drink massive amounts of thirst quenching drinks like Gatorade, but it never really seemed to get better. At the time I’d also started to prepare a diet full of foods that were gluten free. You see, while on vacation, my doctor’s office had called me to say that my test results were back, and it turns out I was allergic to wheat. The idea of switching to an entirely gluten free diet was kind of a daunting task for me. Life changing, I thought. Life changing was just getting started for me, as it turned out. A couple of days after getting home I became sicker, and sicker, and finally went to the emergency room where I was diagnosed as a diabetic with a blood sugar level of 544. Talk about a double whammy.

Faced with the prospects of a strict eating schedule, along with shots of insulin 4 times a day, all now being truncated by the threat of having wheat in any of these meals, was kind of a shock to me. It’s taken me several weeks to get use to the idea and the motions, but use to it I have become. I’m alive, so I can say, and my life remains for the most part unaffected. What I thought was a terrible disease seems par for the course now.

It also seems a lot less serious when you think of some of the other diseases out there. Sure, everyone’s aware of cancer. But what if you were to go to the doctor and discover that your connective muscle tissues were turning into bone, there was no cure, and the older you grew the more restricted your life would become as you became encased in a prison made of your own second skeleton?

That nightmare sounds like the plot of a science fiction novel, but for 700 people around the world and 200 in the United States, it’s a reality. Fibrodysplasia Ossificans Progressiva, otherwise known by the acronym FOP, is precisely that. Caused by a mutation, its a genetic disorder where children are born with the capability for their tissue to turn into bone upon flare ups that can be caused by the slightest bit of trauma. Bump into a table? Have blood drawn at the doctor’s office? Sleep in an unusual position? Any and all of these scenarios can cause bone to form where it shouldn’t literally over night. No, it can’t be cut out — the surgical trauma of doing so would only make things worse.

People with FOP try to live normal lives. They have friends, they have loved ones, but the eventuality of their disease is ultimately unavoidable. By the time they’re 40 years old, most are confined to wheelchairs and completely unable to move. They need people to help provide them with the basic every day care we take for granted. Washing our hair, putting on clothes, all of it becomes out of reach. Some even need oxygen masks as bone ossifies over their rib cage, making it difficult for their lungs to expand.

The Curious Case of Harry Eastlack is the most famous example of FOP, particular because poor Harry seemed locked in an upright position and was carried around everywhere like a plank of wood board, but invaluable because upon his death from pneumonia, Harry wished his skeleton to be donated to science.

From his skeleton doctors have learned more about FOP than ever before, but progress is still slow. With so few people around the world having FOP, awareness isn’t exactly that common. In fact, only about 4 doctors are truly dedicated to the subject, but those doctors have made leaps and bounds in the search for a cure.

Although a treatment for FOP is closer than ever before, it won’t happen without public support and research, and that means donations. I’m writing this article to achieve both of those things. FOP is not an old disease. It’s not occasional. It seems few, far-between, and unimportant only until your the family that finds itself with a child suffering from it, like the family of Ali McKean, who contacted me via Twitter and showed me this video, revealing how she was diagnosed with FOP only five months ago at the age of five.

No one deserves a life like this. If you want to help find not only a treatment, but perhaps even a cure for people suffering from this disease and those who will be born with it in the future, head on over to the International Fibrodysplasia Ossificans Progressiva Association, aka IFOPA, homepage and make a donation to help.

To quote from the IFOPA page:

What needs to be done? As David Ben Gurion, the first Prime Minister of Israel said, “The difficult we do immediately; the impossible takes a little longer.” With your help, we plan to do the impossible, not just climb mountains, but also move them. Finding an effective treatment and cure for FOP is not a job; it is a mission.

Thank you guys for reading, and help spread awareness yourself where you can.

Comments on: "Fibrodysplasia Ossificans Progressiva: The Most Terrible Disease You’ve Never Heard About" (1)

  1. Hi. I am Ali’s mom, and I just would like to thank you from the bottom of my heart for doing this article. You expressed in words some things we have been feeling for a long time.

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