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FARAFARA Cure FA

Meg Larson

MegLarson1Name: Meg Larson

Age: 21

Where do you call home? Washington D.C metro area

Education: Senior at George Mason University, studying Communication with a concentration in Public Relations and a minor is Psychology. 

How long have you known you are living with FA? (When and how were you diagnosed?) I was misdiagnosed with Charcot-Marie-Tooth (CMT) When I was 14. I never questioned the diagnosis, regardless that many of the supposed symptoms did not apply to me. At 16 I went to John's Hopkins University Hospital to meet with Dr. Thomas Crawford, a specialist in CMT. Within 5 minutes, he correctly diagnosed me with Friedreich's. 

Describe your transition from walking to walker/wheelchair. I won't sugarcoat this at all, I promise you that. I was able to walk fine, a bit unsteady but fine, until I was 20. At 18, I walked at least 32 New York City blocks a day. My transition from walking to a wheelchair/scooter was something I fought every step of the way (pun intended). At first I was embarrassed to use a mobility aid in public. I didn't want people to think that I was this feeble being. Due to my own stubbornness, I fell in public, grew fatigued to the point of near collapse, and looked like a drunken fool fighting the inevitable necessity of a wheelchair.

When I first started using my trusty TravelScoot, I was a bit embarrassed, but I grew to love it. It's the 'holy grail' of mobility assistive devices for long distance (i.e on campus). I got my manual wheelchair after the scooter, and it's been a massive help in home, at restaurants, and in more confined areas in general. For a long time, I thought that use of a wheelchair/scooter would restrict me. Quite the opposite- these devices are not a restriction, they are an asset to my own personal freedom.

MegLarson2When FA gets you down, what do you think/do to feel better? It's a learning process. Don't expect to be positive all the time, especially during the first few years. FA is not something I'd wish for anyone, but if you have it, know that it does get better. You will eventually laugh when you fall down. Personally, I use humor to cope when I'm feeling down. I'd rather laugh at my pain than feel bad for myself, and that's something that took me years to recognize.

What is one way FA has positively affected your life? The most positive thing is my service dog, Jude. He is the greatest asset in my arsenal of medical equipment. This living thing is able to exude emotion and care that a hunk of metal cannot. I urge anyone who has FA - especially those recently diagnosed - to look into getting a service dog.

What is a favorite motivational quote of yours? "Those who mind don't matter, and those who matter don't mind." -Dr. Seuss

What is the best advice you could give to someone newly diagnosed with FA? You can do it. We're all rooting for you.

What is the first thing you want to do when a cure/treatment is found for FA? Buy a pair of Christian Louboutin Pigalles, 100mm (The red bottom heels).

“I have FA but FA doesn’t have me.” What does this statement mean to you? FA is a part of my life, there's no way around that, but it is not the entirety of myself. I'm a writer. I can figure out how to cook just about anything. I can tell you weird facts about dogs for days on end. I love public speaking. I will make you laugh. FA has a hold on me, but I am not just a disease.

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

AbbyYinglingmtcsignatureAbbyYingling2015


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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