My Story

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 + oversized clothes to allow for new physical restrictions

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 17 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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58 Comments on "My Story"

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Elizabeth Emery
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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
Guest

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

Vira
Guest

Hi Jasmin, I saw your story on a newspaper. You are a strong girl, stay strong :)

Vira,
Jakarta, Indonesia

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