Find Your Strength

Hello, I’m Sarah and I’m from Sacramento, California.I was diagnosed with McCune-Albright syndrome when I was about three years old. My mom was putting me down for bed and stroked my face when she noticed a strange lump on my jaw. From there, it took several doctors visits until I could get a CT to confirm my diagnosis.  I have polyostotic fibrous dysplasia present in just about my whole body from my skull to my legs. 

Living with FD/MAS I’ve had to learn how to navigate life a little differently than most. I started utilizing a wheelchair as a preventative measure at the early age of ten. I’m now 24 years old, and working full-time as an administrative assistant for the Vice Principals of a private high school. I use social media and art to advocate not only for FD/MAS but for disabilities in general.

Despite what sounds like a normal and busy life on paper, I find I struggle when coping with FD/MAS. From it’s the unpredictable pain episodes to breaking bones with simply getting out of a vehicle, I need strength to push through every day. 

I FIND MY STRENGTH through the people in my life. My family, friends, this community, and my boyfriend, Luke. I am the youngest of three; I have an older brother, Nick (30), and older sister, Alley (28). My mom, Gina, is an ICU nurse in CA; my dad, Scott, is a retired federal agent in WV. They are my why: Why I get up every morning, why I’m determined to prove my circumstances wrong, why I’ve learned to embrace the hand I’ve been dealt, etc.

They’ve fueled an internal strength in me which has proven time and time again that I can do anything “normal” people do and sometimes do it better!

I’ve successfully launched my own website.

I’ve crowd surfed IN MY WHEELCHAIR!

I was featured in the popular daily newspaper, the DailyMail.

I’ve been able to travel all around the United States.

I was a guest on a podcast.

I was a guest speaker for a college class.

Next I’ll be changing the world! Or at the very least, help rethink the way we look at accessibility in the world.

It’s been a difficult and unpredictable year, but then those of us in the FD/MAS community are used to pushing through difficult and unpredictable circumstances. It’s not just our 2020 or our quarantine reality, it’s our normal. That’s why this year the FD/MAS Alliance is focusing FD/MAS Global Awareness Week on Finding Your Strength. Perhaps you find it through your activities: sports, art, dance, or crafting! Or like me you find it in the people or a person who directly influenced you (family, friend, partner, celebrity, or doctor).

Help us celebrate the FD/MAS Global Awareness Week and the beauty, complexity, and courage of the FD/MAS community by sharing YOUR strength. You can use this form to submit your response. We would love to hear from patients, parents, partners, from everyone in the FDMAS community, FROM YOU! 

Be sure to tag your photos #FDMASstrength