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FARAFARA Cure FA

Christin Haun

I am Christin Haun from Broken Arrow, Oklahoma, part of the Tulsa metro area.  I am 44 years old, and was diagnosed in 1985 as having Friedreich's Ataxia.  My current and primary job focus is maintaining my health.  I have managed to keep my muscles working.  I work at it, and I am blessed with an incredible familial support system, and the gift of perseverance and joy.
  
I am the only person in my family has or had ever been diagnosed with FA.  I was born an Okie, and lived the first decade of my life as a nature-loving, tomboy. I am the eldest child, and bossy sister to one brother. At the age of twelve I began having issues with spine curvature, and wore a corrective back brace.  Despite physician treatment, the curvature progressed.  It was time for a different orthopedist. 
 
The new orthopedist recommended spinal fusion, and recognized something was amiss with my gait. He surmised a neuromuscular problem, and referred me to a neurologist, who then confirmed the hypothesis. It was a very confusing, unhappy time, and the initial diagnosis was delivered as an emotionless death sentence. I had something that I couldn't pronounce that would put me in a wheelchair by the age of twenty, and by age thirty I'd be dead. Needless to say, I was traumatized, and then numb. I sought a second opinion.  The diagnosis was the same; however, the second neurologist was a little more sensitive to a teenager, and wanted to help me understand the disease, and its process.
 
Initially, I was diagnosed by symptoms only.  Scoliosis, irregular gait, dishing of he hands, high arches of my feet, limited muscle reflex, clear CaT Scan, slow muscle response from an EMG.  Genetic testing wasn’t an option thirty years ago.  A genetic test in 2004 did confirm that the diagnosis was correct.   Twenty five years ago, I still couldn't even speak of FA without bursting into tears.  I knew no one with the disorder, and hardly anyone had ever even heard of it.  I did feel alone in my fight, and as a result, didn’t much speak of it.
 
As people do, I just went on... high school graduation, college, marriage, career as a Special Ed. College was the first time I used a wheelchair - actually a mobility scooter. I parked it outside the classrooms and walked in. I used a scooter while beginning my teaching career, and worked for the last time in 2001.   I have lived in different areas of the state. Currently, I am a divorcee, and reside with my primary caregivers.
 
Currently, I spend almost eighteen hours a week with an in home personal care assistant (thank you taxpayer, you make that possible), and two days a week, Dad takes me to the gym/physical therapy. I follow healthy eating habits, and a vitamin/supplement regime.  I do not have ongoing pain, thank God. Last year, I had some painful muscle shortening, but with the help of a physical therapist, I stretched it back out. I am blessed with many opportunities, mercies, and kindnesses. I am very cognizant that circumstances could be worse. With this in mind, I try to suck it up and go on, and bloom where I'm planted. 
 
FA , in my opinion, is quite a cruel disease.  It is relentless, demanding, and overwhelming.  That being said, I tend to be a positive person. I strive to achieve.  I choose living, and learning, and challenging myself.  Years ago, I knew on an academic level, the progression patterns of FA.  I never once doubted that a cure wouldn’t come along.  Mobility issues never fazed me.  Using adaptive equipment is no problem. I didn’t particularly like the diagnosis, but it did not stop me; until now.  I’ve lived thirty years as being diagnosed with Friedreich’s Ataxia.     Does it stop me from doing all that I want to do?  Heavens, yes.  I have settled into the part of disease progression of being physically dependent.  Freedoms I once took for granted, like driving, living on my schedule, cooking, cleaning, gardening, maintaining a house, or, taking care of a pet are fond memories.  Many dreams have died, as I have been confronted by the reality of FA.  Have I given up?  Not a chance.  Granted, I have limits, but within those parameters, I am an active, healthy, busy, happy person.  I enjoy singing in the church choir, reading, attending rock and country music concerts, working out at the gym, and spending time with friends and family.
 
I feel empowered by FARA.  I no longer feel alone or disconnected.  My sense of hope is real.  I believe wholeheartedly that FARA will succeed in stopping and curing FA.  I enjoy rideATAXIA Dallas, both volunteering and the event itself.  I’ve also organized my own grassroots fundraiser, called BA cure FA, in Broken Arrow, Oklahoma.  The event is two years old.  FARA has enabled me to use some gifts and talents that I thought unusable at this point.  I am grateful.
 

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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