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,

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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You could try to understand you limiting condition by using Ayahuasca in Santo Daime, in Rio de Janeiro, Brazil, for at least 4 times (on concentration sessions). Don’t use pure DMT. It’s too intense, too fast forward and lasts only 5 minutes. It can confuse you. Each Ayahuasca session lasts 4 hours of duration and gives you enough time to test the strength of your mind and will. You can control all the situation by closing and opening you eyes. When you close your eyes you will see the inner world clearly. If you want to stop this simply open… Read more »
Elizabeth Emery

Hi Jasmin, I just wanted to thank you for sharing your story and helping to raise awareness of this disease; my niece has FOP as well. Your courage and willingness to share have made a huge impact!

Bhuwnesh Raghav

#brave girl #strong girl , no words to elaborate your strength
Inspiring to everyone …
Always be happy..

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  • My first blog post of the year is dedicated tohellip
    3 days ago by p0sitivity My first blog post of the year is dedicated to everyone who has supported me throughout my life with FOP. ❤️❤️ (link in bio)
  • After seven years of friendship we finally had the opportunityhellip
    7 days ago by p0sitivity After seven years of friendship, we finally had the opportunity to experience California together last month! It was such an honor to be able to share my FOP family with my bff ❤️
  • It is the places where your pain hides that needhellip
    2 weeks ago by p0sitivity “It is the places where your pain hides that need your love the most.” ✨ - @cleowade 
  • Already planning road trips together months in advance  missedhellip
    2 weeks ago by p0sitivity Already planning road trips together months in advance ‍♂️ missed my best friend ❤️
  • Spending this blizzardy day looking through pics from my triphellip
    3 weeks ago by p0sitivity Spending this blizzardy day looking through pics from my trip to CA last month - already excited for the next adventures ❤️  #twomonths  : @carolraleigh 
  • Too cute to move
    3 weeks ago by p0sitivity Too cute to move ‍♀️
  • Im extremely grateful to be surrounded by so many incrediblehellip
    3 weeks ago by p0sitivity I’m extremely grateful to be surrounded by so many incredible friends, family, and supporters. You’ve all given me hope, encouragement, strength, and courage to make it through each day. After a really difficult year with FOP, I’m so ready for new adventures and even more amazing memories. ❤❤❤  #2017 
  • Spending time back home in Wisconsin always reminds me ofhellip
    4 weeks ago by p0sitivity Spending time back home in Wisconsin always reminds me of my childhood self ❤️  #tbt 
  • When its 0F but feels like 22F anything is consideredhellip
    4 weeks ago by p0sitivity When it’s 0°F but “feels like” -22°F, anything is considered warmer ‍♀️☃️
  • Merry Christmas from my Midwest fam
    4 weeks ago by p0sitivity Merry Christmas from my Midwest fam ❤️