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FARAFARA Cure FA

Rachel Conger

RachelConger1Name: Rachel Conger

Age: 19

Where do you call home? Wilmington, Ohio

Education (degree(s): I graduated from Wilmington High School in 2014. I'll be starting art classes soon.

What is your relationship status? I'm happily engaged to my love, Eric. April 30th 2016 is the big day!

What's a typical day for you? Wake up and do what needs to be done. 

How long have you known you are living with FA? For 3 1/2 years, I was diagnosed a few months before my 16th birthday.

RachelConger2Are there any others with FA in your family? I’m the only one.

Describe your transition from walking to walker/wheelchair. FA hit me all at once. One day I was the normal high school senior getting ready for school when I fell, broke my tibia, fibula and tore a ligament in my right leg. I had immediate surgery because unfortunately, my bones were separating and my foot wasn't attached. I thought after 2 short years, F.A got the best of me. I was in a wheelchair for my senior prom (still had a blast still), and for months after. I managed to walk to get my diploma with a walker a day after I was cleared to walk. Now a year and a half later I'm still fighting to walk independently.

What do you like to do to stay active and what type of exercises work for you to stay strong? I spend a lot of my time at the gym where I can show off how strong I still am. I recently started OT as well.

Do you have any hobbies or special interests? I'm very artsy and love to paint and draw. I'm also a gamer (yes video games).

What is a good trick to make daily life easier? Live everyday like you're dying. Do the unthinkable with no regrets, and live life to your fullest potential. When I'm feeling down, I always remind myself that everyone struggles with things in their life and it could always be worse.

When FA gets you down, what do you think/do to feel better? When I'm feeling down, I always remind myself that everyone struggles with things in their life and it could always be worse.

RachelConger4What is one way living with FA has POSITIVELY affected your life? F.A has positively affected my life by teaching me to look past peoples disabilities. It's shown me that there are amazing people in the world that could know nothing about you at first but just jump in to your life and be your back bone. I've learned just how precious life really is.

What is a favorite motivational quote of yours? " Give me strength when I'm standing and faith when I fall”.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Sad to say, it's not easy but it's possible. Everyone is unique in their own way and we all have flaws. But at the end of the day you're different and it's ok to be different. You're uniquely different.

What is the first thing you want to do when a cure/treatment to FA is found? The first thing I would want to do when a cure is found is never stop running and while I'm at it I'd jump and feel what it's like to flip in every direction again.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? F.A doesn't define me. I define my own disabilities. You can't just ignore the way people look at you or judge you. I've learned to take other people’s negative attitudes and turn it into something positive. We all have hard times in life but the only thing that makes them hard is how YOU let it impact your life.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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