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FARAFARA Cure FA

Jeannie Kinney

To all to all of you wonderful people, living this unpredictable life we live. I am Jeannie, J or to a select few mama J and mom. I am 40 years old with late onset Friedreich's Ataxia (FA). I have two siblings, one with FA and one without.

Here we go...when I was in high school, I did not have a clue that the reason all of my fancy dresses didn't fit right was due to a secondary condition of FA, scoliosis. No gym teacher or school nurse ever caught the curve in my spine, so I carried on. After college, I was oh so young and ready to save the world as the best nurse ever. Ha! My first symptom would soon be upon me but it only lasted thirty seconds or so, my feet felt heavy running down the corridor...hmmm strange, I thought. Then weeks and months went by, different things would happen but I just brushed them off. One day I was carrying my coffee to my station and it seemed like someone tripped me. CCU is known for practical jokes but no one was around, I looked;), and tried to act cool! This started a long search for a diagnosis. Thirteen doctors and muscle biopsies, scans, potential brain tumors, skull malformations, one spinal fusion surgery and two states later, I got my official diagnosis of FA. I don't think it hit me like a ton of bricks, I don't remember, my friend Tom will say it's because I'm so old!

 

If I was asked "Does FA define you? MY answer would be, now, a much realized and appreciated YES! FA gives you boundaries and limits same as life, FAer's are amazing people! Imagine everyday you discover something new you can't do anymore, so you adjust and figure it out! For example...oh, I can't carry my coffee without spilling it because I don't walk straight anymore, so you put a lid on it. Then, how do I get it from point A to point B? We think about our every step and then we adjust everyday and overtime. FA is a chronic progressive condition, we go from walking, to walking with a strong arm to hold onto, to furniture walking, to a cane, to a walker, to a wheelchair. The struggles that you go through are true for every person in every walk of life, character builds and how do you handle it?

I was lucky or blessed, you decide, I was able to attend college and become a nurse. I was also able to marry and divorce twice ;) I have two outstanding children, that make my world go around. I have had a pretty easy life, some may disagree. The point being, I can do anything, I just do it different. If I was giving advice to the younger FA crowd, I would say you really can live out your dreams, it just takes a little patience. Expect that everything is going to be a little more difficult, just take a deep breath and relax, it is more than likely most everything very doable.

FARA will continue their efforts to find us treatment and eventually a cure, and I will do all I possibly can to spread awareness down south. I am here for anyone to talk to, if you have a question, I would love to help you and if I don't have a good answer, I'll find get you someone who does.

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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