November 2016 (age 23)

Hello! My name is Jasmin. I love traveling, going to concerts, public speaking, reading, and volunteering. I’m also very passionate about writing, which is partly why I wanted to start this blog. It’s been years in the making, but I’m anxious to be able to share my story and raise awareness of my rare disease.

My parents and I moved from Wisconsin to Connecticut in July of 1998 after an exciting job offer. This was a huge deal for us because we didn’t know anyone in CT (or anywhere in New England) and would have to build a new life in a new state. As difficult as goodbyes were, things eventually seemed to be falling into place. I was getting ready to start Kindergarten and my parents were settling in and beginning to adjust to the changes.

February 1999 – a month after my FOP diagnosis

And then our lives took a drastic turn…

I was five years old when my parents noticed something may be wrong with me. I had complained of a stiff neck on the way to school in the fall of the same year, but we assumed it was due to sleeping the wrong way and didn’t give it much thought.

By the end of the school day, my neck seemed to be slightly tilted in an abnormal position.

After meeting with four different doctors and having numerous genetic tests done I eventually got the diagnosis of Fibrodysplasia Ossificans Progressiva (FOP), an extremely rare and life-threatening bone disease, in January of 1999.

My disease can be quite difficult to explain and comprehend (even for me), so I’m quoting the International FOP Association’s website, www.ifopa.org.

One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

FOP affects 1 in 2 million people, but there are only 800 confirmed cases worldwide.

I am one out of less than 300 with FOP in the United States.

I have lost full mobility in my neck and jaw, and partial mobility in my shoulders, elbows, and hips. I also deal with chronic pain, scoliosis, bony lesions on my back, and a restricted lung capacity due to the extra bone growth surrounding my rib cage.

This sudden diagnosis 18 years ago was understandably shocking and devastating for my parents, as well as for the rest of my family and friends. It was difficult for them to see me so happy, able-bodied, and carefree when I was younger, knowing that FOP would gradually progress and someday leave me feeling trapped in my own body.

As scary as life with FOP is, I’m very determined to maintain a positive attitude despite everything I’m faced with. I appreciate my journey and am grateful for my struggles and obstacles. I try to always find joy in the little things in life and notice the smallest of achievements.

My disease has taken so much away from me, but I can’t imagine my life without it. I see it as a sort of blessing in disguise, not a complete tragedy or misfortune. My circumstances have led me to incredible opportunities, lifelong friendships, strength, hope, determination, and happiness.

October 2016 – traveling in San Diego, California
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Lindsey Levitan
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I too have a health challenge, epilepsy, and I feel like a level of empathy and compassion comes with health struggles as well as a personal fighter within us that only we can understand. Stay strong, girl!
Lindsey
Please email anytime
lmlevitan@gmail.com

Lois Helgeson
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Praise God for your faith and making the best of your circumstances. I will keep you in my prayers!!!!

Keosha McClendon
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Jasmin you are such an inspiration. I love your positive energy despite the obstacles you face. Continue to let your light shine champion!

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  • So happy to be feeling more like myself again Thankhellip
    1 day ago by p0sitivity So happy to be feeling more like myself again. Thank you for all the love and prayers ☀️
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    3 weeks ago by p0sitivity One month until I’m back in my favorite city, San Diego ☀❤ // I especially love visiting the zoo with my family and renting one of these scooters. I’m unable to walk longer distances without feeling fatigued, but this allows me to conserve my energy and still fully enjoy the…
  • Thank you for all the love new followers!  Ahellip
    3 weeks ago by p0sitivity Thank you for all the love, new followers! // A YouTuber recently filmed himself reacting to my CNN profile feature video!! Search “Reaction Time” on YouTube to watch it (he also has some of the nicest fans). ❤️
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    3 weeks ago by p0sitivity Always grateful for good days and whenever I feel more like myself
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    4 weeks ago by p0sitivity January 27, 2013 // I reflect back on this journal entry every year. It’s crazy to see how much my writing style has changed since then and how I’ve grown as an individual. I posted it on Facebook the following week not even realizing how vulnerable it was. The response…
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  • My first blog post of the year is dedicated tohellip
    1 month ago by p0sitivity My first blog post of the year is dedicated to everyone who has supported me throughout my life with FOP. ❤️❤️ jasminfloyd.com (link in bio)  #fibrodysplasiaossificansprogressiva 

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