Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Christin Haun

Name: Christin Haun

Age: 43

Where do you call home? Broken Arrow, Oklahoma

Relationship status? Do you have children? Divorced, no children.

Occupation/Employment: I do not work anymore.

Education: AA in Psychology and BS in Special Education. Alma Mater: Northeastern State University in Tahlequah, OKlahoma.

How long have you been living (or known you are living) with Friedreich's Ataxia? 29 years diagnosed with FA. I was diagnosed initially by my orthopedist that recognized the correlation between scoliosis and unusual gait patterns. His hunch was confirmed by a neurologist.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No one in my family tree has or has ever been diagnosed with FA, or neurological impairment.

Describe your transition from walking to walker/wheelchair. I resisted the transition, purely out of pride. In my mind, relying solely on a wheelchair meant letting the disease “win”. Once I began using a chair, I realized how my independence increased; the opposite of how I envisioned using a chair would be.

What do you like to do to stay active and what type of exercises do you do to stay strong? I work out twice a week at a community facility just for adults with physical challenges. The work- out room has exercise equipment for all mobility levels. I spend time using a recumbent elliptical, Nautilus weights, and a raised mat to stretch on and exercise. At home, I do chair sit-ups, and stand via a standing frame.

Do you use any tech aides? if so, what works or hasn't worked for you? I’m not too sure that this is considered a tech aide, but one of the greatest gifts my parents did, was to install a motion sensing light in the bathroom. After 10 min. Of no activity the light turns out. No more fumbling w/ light switches.

What's your most comfortable pair of shoes to wear? New Balance Walking Shoes.

Do you have a diet plan you like to follow, and why? Low carb; no sugar. I noticed from the age of 17, consuming sugary food or drink negatively affected my coordination. I began following a low carb diet when I turned 39, as a measure to keep the weight off. At the present, I do not have diabetes, either.

Do you participate in any adaptive sports or recreational activities? No, just a gym rat.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I have a very strong-willed personality, which serves me well in living with FA. However, looking back on periods of my life, I can recognize paths I took that could have been quite self-destructive. Nothing but FA stopped my behaviors, and I had a more positive way to focus my strong will.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Get a signature stamp while you are still able to write your name. Learn all you can about FA and get connected with others (FARA events and social media are great ways to meet and stay in touch with others battling FA). Be proactive and diligent with diet and exercise.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Go to the bathroom alone. For the past nine years, I’ve required help with transfers, consequently, I must announce or pre-arrange bathroom visits with someone. I appreciate this necessary assistance but I will relish peeing alone.

"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? Keep striving for a better you!


We are stronger together! Find a new "Meet the Community" interview every Monday. Andrea

 


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.

 

More articles from this author