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FARAFARA Cure FA

Chrissy Thomas

ChrissyThomas1Name: Chrissy Thomas

Age: 30

Where do you call home? I grew up in Atlanta, Georgia and now live in Greenville, South Carolina

Education: B.S. in Family and Consumer Science from the University of Georgia (Major: Child and Family Development)

Who do you live with? My husband, Nick

What's a typical day for you? My days are never routine, but typically I workout every morning. My husband Nick and I own a food truck and we work at least five days a week for lunch and dinner shifts. I work the window, and help with anything else Nick needs. I am usually exhausted after these shifts, but I try to keep a good balance in my life of hanging out with friends and family. 

How long have you known you are living with FA? I was officially diagnosed with FA 4 ½ years ago at The Mayo Clinic in Rochester, MN. I became symptomatic with Friedreich’s 10 years ago, when I was 19.

Are there any others with FA in your family? Yes, my sister, Catherine is also living with FA. Check out her bio HERE. We think we are both point mutations because only one of our alleles is really expanded, yet we have low frataxin levels.

ChrissyThomas2Describe your transition from walking to walker/wheelchair? My transition was not typical in many senses. My body first started showing signs of FA in 2006 at the age of 19. I was hospitalized for six weeks. After the hospital, I needed a wheelchair to get around. However, with the help of intense physical therapy, I went from a wheelchair to a walker to a quad cane to nothing. Over the next six years my walking became more difficult. I was hospitalized again for 8 weeks, and used a walker full-time after that. I began using a wheelchair after my third hospitalization of 6 weeks. I was finally properly diagnosed during this hospital stay. I can still walk short distances with the help of a walker.

What do you like to do to stay active and what type of exercises work for you to stay strong? I get bored easily of working out, so I try to stay busy with a myriad of activities. I swim, strength train, cycle, do yoga, and have just started horseback riding.

Do you have any hobbies or special interests? I have had a lifelong addiction to makeup. Sephora keeps my wallet empty! All of my friends and family have all had their makeup done by me. And I love to travel. The world is so large and there is so much to see. I will try anything once. I love anything adventurous.

What is a good trick to make daily life easier? Surround yourself with people that you love, people that encourage you to fight against FA and whatever other worldly injustices that come your way. Most of all, laugh. Laughter is hands down the best medicine.

When FA gets you down, what do you think/do to feel better? I just think of how much worse my life could be. Yes, I am suffering, yes I am in pain, but I am surrounded by people I love and who love me. My faith in God has grown stronger. This puts everything into perspective for me. It does nothing to dwell on how unfortunate you are to be handed a certain card in life. Get over it. Live your life. This disease will not control me or my life.

What is one way living with FA has POSITIVELY affected your life? I feel like I have lived two lives. The one where I was walking, and thought I was invincible: I was so naive. I am proud of the journey that my life has shifted into. I am more patient, kind, and full of hope, hope that one day there will be a cure. I know what internal strength is. I see it in everyone fighting FA, and I see it in myself. I never would have thought that I would be capable to be this strong in the face of adversity.

What is a favorite motivational quote of yours? “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” - Margaret Mead

What is a piece of advice that someone with FA has given you that encourages and inspires you? My sister Catherine inspires me constantly with her strength in dealing with FA. After I was diagnosed, I was in such a dark place. Catherine, told me to live the life I would have lived without it, that FA doesn’t define me. I credit her to helping me out of my mourning process, into a life worth living.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? It’s okay to mourn the life you envisioned for yourself. But, create a life that you never thought possible. I would encourage you not to isolate yourself, but instead get actively involved with the FA community. Technology is so amazing, in that you can join all these great FA communities through Facebook. You have an entire community, where someone, somewhere can relate to what you’re going through. You don’t have to figure things out alone. We are all FAmily!

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What is the first thing you want to do when a cure/treatment to FA is found? This may sound crazy, but I haven’t really thought about it. There are things I definitely miss when I was able-bodied. I think it’s important to be optimistic and hold out hope, but I am afraid if I think too much about life without FA, I will be miserable in the life I am in.

"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? My life is mine. FA does not control my mind. It may influence my body in ways I do not like, or understand, but it does not control me. I think, feel, love, and grow without the help of FA, and probably in spite of it. FA has taken so much from me, but it has also given me this new way of understanding. I choose to live a life that I create, not one that’s created for me. Everyone is fighting a battle that we know nothing about. Life is hard, and at times it sucks. But it is also beautiful.

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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