My name is Orly Doron. I have a story to tell of my life. I don’t know if it’s happy, it’s not over yet. I am 45 years old and I live in Israel. When I was eight years old, I was diagnosed with a rare illness called FOP. Only about 1 in 3 million people have this illness. It is a hard and lonely disease to have. With time, for some unknown reason, the body creates bone inside the muscles. Why? 40 years of research and no answers. I was ok until my late 20’s. I had bone in my backbone, shoulders, and hip joint…but I still functioned. People stared at me as the odd one. Kids wouldn’t play with me – so I adopted books. I was a good student and wanting to know about my FOP, I studied biology. I now have a Ph.D in molecular biology and biochemistry. I worked in a lab and also tried experimental ideas with my physician. I discovered that some treatment given to bone cancer patients (remember- I have bone growing in me in the wrong place!!) slowed the pace of the flare-ups. I was better physically than most patients of my age. I shared the discovery with the only hospital in the USA that treats FOP. They didn’t believe me at first but what was the alternative? Doing nothing??
Unfortunately, my condition worsened suddenly. My arms were affected and I couldn’t use them as well. Suddenly, I needed a 24/7 caregiver. I had to leave science because no one would hire a disabled woman. My life was shattered…I lost everything. Including the chance to be a mother. My job meant everything to me…and my physical independence.
Since then, I opened a small translation business…but money is not easy. Many times i am too ill to take a job. The past year has been extremely bad. I hardly do anything alone.
So why am I writing to you? Because I still get up every morning, and though my life isn’t great, I want to live. My dream is to have a show of photographs. I love taking photos of flowers. Here is a link to my site: http://www.picshare.co.il/member_gallery.asp?id=1039#.UB1UoJFuvJs
I get no physiological support because of the rareness of the disease. I fight it alone, but I keep fighting.
Maybe other WOMEN can Bless their lives for having what I don’t.