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What is THAT??

Updated on May 27, 2013

FOP-related images

Information on FOP
Information on FOP | Source
Myself and John, both FOP "sufferers"
Myself and John, both FOP "sufferers"
The only FOPer that had a limb amputated due to misdiagnosis. She's been on several tv programs
The only FOPer that had a limb amputated due to misdiagnosis. She's been on several tv programs
My dad and I with Dr. Kaplan, head researcher, and other laboratory scientists, at 2007 Symposium
My dad and I with Dr. Kaplan, head researcher, and other laboratory scientists, at 2007 Symposium
Founder of International FOP Association, Jeannie Peeper
Founder of International FOP Association, Jeannie Peeper
Myself and John enjoying island living in our wheelchairs
Myself and John enjoying island living in our wheelchairs

Description and Background Story

Fibrodysplasia Ossificans Progressiva...I know it sounds like a mouthful, and it definitely is, but it is worth knowing about. According to www.rarediseases.org, a rare disease is defined as a medical problem that effects less than 200,000 people. FOP is one of these rare diseases. It only affects around 700 people in the world. That sure is a small percentage compared to the world population! You wanna find someone with it? You're gonna have a 1 in 2 million chance of finding someone, so you better look hard! We are scattered all over the place, but, the majority are in other countries...In the US there are only around 300 of them. I am one of these "sufferers." I use the term loosely, as I don't believe I am personally suffering because of FOP. I was diagnosed at 15 years old; 10 years past the average age of diagnosis in most people with FOP. Yes, there are moments of pain, but I am one of the lucky few who has no need for pain management.

What does it do? Well, to keep it simple, the muscle turns to bone. It is the only disease known to man where one organ turns into something else. Pretty amazing, huh? I think so. I was devastated when I got the diagnosis, and it took some time to get over that, but I am better now. Being 15 and getting diagnosed with something so rare and debilitating can make you feel like your life is over. I thought so...I went through severe depression for many years. I wasn't popular in school, so the diagnosis was no help. I met someone who was a few years older than me, and lived close, who suffered from FOP. He helped me feel a little better, but it wasn't enough to overcome the depression. I spent much of my time on the computer, in chat rooms talking to people that couldn't judge me by looks, because they didn't know me. I felt important in that world. People talked to me. But there were a lot of crazy people on there, so I had to switch chat rooms sometimes. It got really boring, but I didn't know what else to do to make myself feel better. I graduated high school, went to work full time, made a few friends along the way, but still felt inadequate as a person in society. I just didn't fit in.

Life was boring for me. I went out to karaoke, I worked, I talked to people; still it wasn't enough to make me happy. I was kind of just going through the motions of life. In 2008, I decided to take my first solo vacation to South Florida. I was supposed to be down here 2 weeks, but my vacation was cut down to 4 days because of tragedy back at home. My dad passed away, and I had to fly home. I went through the typical things with a funeral and what not, but the details aren't so important. After only being in South Florida 4 days, I had fallen in love with the area and was determined to figure out how to move down here. Besides, it was hard being in the same house my dad died in. Well, to keep it simple, everything worked out and I moved down here. It was kind of miraculous and amazing the way everything fell into place.

I have since been down here for almost 5 years now, and can't imagine living anywhere else. Since moving down here, I have earned an Associate's Degree and am currently working on a Bachelor's Degree; I couldn't be happier. Ok, maybe I could be, but I'm working on that.

Why did I feel my life story was important to tell you? Well, to tell you the truth, without my diagnosis of FOP, I don't think I would be where I am today. I have learned many things about myself since diagnosis in 1997, and I continue to push forward despite my limitations and hardships. Now, maybe I didn't tell you my whole life, because trust me, there were many things that happened to me from the time I was born that affected me drastically. But I don't believe my life truly began until 1997 when FOP became a major part of my life.

My life sucked big time prior to 1997. I never really tried to do anything.of significance. I mostly kept quiet throughout my entire time in elementary, middle, and high school. The day I graduated high school, I made a life-changing decision. I chose to confront the one person who openly stated that she hated me, without any reason to back it up. Her excuse was the most lame: "I hate everyone." How sad is that? I got my closure from that, and then it was time for my next major step in life. I decided that if I wanted to get anywhere in life, I had to come out of my shell and stop being so quiet and reserved. I had to go out and do things and figure out things to talk about that didn't bore people to the point of ignoring me.

Today, people would never think I was once very shy and reserved. I have learned to speak my mind, which has gotten me in trouble a few times, but I couldn't keep quiet. I have a very curious mind, and sometimes I ask questions that aren't always appropriate. Not like extremely personal questions, but ones that really should be discussed in social situations; more of one-on-one type of discussion appropriate questions. For example, I know a couple from Canada, they are lesbians, but it doesn't bother me. I was at a social gathering and asked one of them if they were married, because I knew it was legal in Canada. I asked out of curiosity, but she confronted me on the question because she was afraid of being judged. She is a real estate agent, and was afraid that the truth of her personal life would tarnish her reputation. That was not my intention. I was only curious. I did get my answer though.

Now, I have my moments of shyness still. I don't do well in groups of people. I tend to keep quiet unless someone speaks to me. I guess you could call it social anxiety due to my lack of social skills growing up. If I am in a small group, I am more likely to speak up. I feel like I really need a major lesson in socializing. Where do you learn that? I'd really like to know.

This summer I took a break from college after 2 1/2 years of studying nonstop. I will be returning in the fall, but this break was much needed and deserved. So, my goal this summer was to enjoy myself and get out more. I have done pretty good so far. I have done some fun stuff with some of my friends. I have made a couple of new acquaintances at the local bar. I can't call them friends just yet, but hoping it comes to that point. The local bar is starting karaoke this week, which will bring me much joy. Singing is a passion of mine, and I just discovered I inadvertently met the DJ last weekend, without even realizing it. He is one of the new acquaintances I mentioned. He seems like a really nice man, and I hope to make a good impression on him again when I get up to sing karaoke on Wednesday night. I'm so excited and I can't wait! I like the attention I get after people hear me sing.

Hope you all got something out of this blog. There will be more to follow. Feel free to ask me anything, within reason, and appropriate. Thanks for reading :-)


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      Karen Munro 3 years ago

      Hey, good for you, Kim! I enjoyed your first blogging attempt. It was interesting to read about you and your life. I'm glad you're enjoying Florida so much! :)

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