In Her Own Words
I am Christin Haun from Broken Arrow, Oklahoma, part of the Tulsa metro area. I was diagnosed in 1985, at 14 years old, 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 was born an Okie, and lived the first decade of my life as a nature-loving, tomboy. I am the eldest child, and have one brother (who does not have FA). I am the only person in my family that has ever been diagnosed with FA. Looking back, of course, there were signs of FA. But the first really noticeable sign was when, at age twelve, I was diagnosed with scoliosis and it kept progressing in spite of the horrible Milwaukee Brace.
After a spinal fusion recommendation, a new orthopedist 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 helped me understand the disease and its process.
Initially, I was diagnosed by my symptoms: scoliosis, irregular gait, dishing of the 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 teacher. College was the first time I used a wheelchair - actually a mobility scooter.
Currently, I spend almost forty hours a week with an in-home personal care assistant (thank you taxpayer, you make that possible), and two days a week, I go to the gym/physical therapy. I follow healthy eating habits, and a vitamin/supplement regime. 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, and 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 have never once doubted that a cure would 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-five plus 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, listening to audio books, watching movies, attending theater productions, listening to music, working out at the gym, and spending time (in-person and via video chats) 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 and its partnering researchers will succeed in treating, stopping and curing FA.
FARA has enabled me to use some gifts and talents that I thought unusable at this point. I am grateful.
What are the realities of FA for you, such as adaptations?
Because the scoliosis kept progressing in spite of the brace, I had spinal fusion surgery when I was sixteen. I was still able to walk but began wearing high-top shoes to help with stability. When I started college I began to use a mobility scooter up until about three years ago, when I transitioned to a power chair. Increasing progression has presented more challenges and adaptations, such as ankle support braces, a roll-in shower, physical therapy, speech therapy, and full-time care assistance.
What inspires to keep moving
“Use it or lose it.”
What motivated you to become a FARA ambassador and what did that entail?
I was inspired to become a FARA Ambassador because I wanted to give back. To become an Ambassador: you must have FA, be 18, enroll (typically in Nov/Dec for participation the following calendar year), be able to attend a monthly meeting via Zoom, and join one or more teams to raise awareness for FA and funds for FARA. I am taking a break from being an active FARA Ambassador. I served five years as part of the curefa.org ambassador blog team. I enjoy rideATAXIA Dallas, both volunteering and the event itself. I’ve also organized my own grassroots fundraisers in Broken Arrow, Oklahoma. In 2016, before my speech got too compromised by FA, I had the opportunity to speak on an FA patient panel to Reata employees in Dallas, TX. The goal was to allow the employees to meet the people they were working to help, and put a face to FA. In 2019, I had the opportunity to be a part of Reata’s Patient Advisory Board and help create an FA Care Kit.
Are you encouraged by the recent approval by the FDA for the first drug therapy for the treatment of FA?
I am! I have waited for decades to hear this news. I don't know how well this particular treatment will work for me, but I am willing and excited to try.
Favorite Quotes
"Just Do It" ~ Nike slogan
"Your speed doesn't matter, forward is forward" ~ Unknown
"Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing." ~ Mother Teresa
"Live well, Laugh often, Love much"
"What the caterpillar calls the end of the world, the master calls a butterfly." ~ Richard Bach