Meet Kyle Duhon

Name: Kyle Duhon

Age: 27

Where do you call home? Lake Charles, Louisiana

What is your education? Attended college.

Who do you live with? I live alone in an in-law suite adjacent to my parent’s house.

What’s a typical day for you? On a typical day, I will do some physical therapy, socialize with my friends on Discord, and play video games on my PC.

How long have you known you are living with FA? When and how were you diagnosed? Eight years; from a genetic test ordered by a doctor at Houston Methodist.

Are there any others with FA in your family? Yes, my older brother also has FA.

Describe an adaptation and/or transition you have had to take due to living with FA. One transition I have taken due to FA is being less willing to engage in outdoor activities such as fishing or hunting.

What do you like to do to stay active and what type of exercises work for you to stay strong? I find core and leg exercises have helped me stay active and moving. I also participate in physical therapy twice a week.

Do you have any hobbies or special interests? I am an avid video game player and enjoy accompanying my dad to fish on the lake.

What is a good trick to make daily life easier? It is difficult to carry a drink with FA. Invest in some cups with sealable caps. It will allow you to carry your liquids and not spill on yourself.

When FA gets you down, what do you think/do to feel better? I join my friends on a video game and the social interaction leaves me feeling better.

What is one way living with FA has POSITIVELY affected your life? Thanks to FA, I have developed a much deeper sense of patience both for myself and for other people. 

What is a favorite motivational quote of yours? “Real change, enduring change, happens one step at a time” –Ruth Bader Ginsburg

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Falling is inevitable. Getting yourself back up isn’t. Even if it is painful, never stop getting back up and moving.

What is the first thing you want to do when a cure/treatment to FA is found?
I want to enjoy the outdoors like I did when I was younger.

“I have FA but FA doesn’t have me.” What does this statement mean to you? This statement to me means that FA is a large part of my life, but it is not all of my life. It does not define me as a person, but is a condition I as a person have.

How do you live your life in the face of adversity? In the face of adversity, I have found the value of living in the present moment, whether that is playing a video game online or socializing with loved ones. Everyone has a set time on earth. It is up to each of us to give it meaning.

Did your diagnosis impact your friendships and relationships? If so, in what way? My friends became much more proactive in helping me with any physical challenges. My family has always been supportive.

What do you wish the general public understood about FA or disabilities? Not all disabled people look exactly alike. Disability can be invisible and we should never assume disability or a lack of disability based on looks alone.

How long have you had your hobby/special interest? How did it start? Why is it important to you? My favorite hobby is playing video games. It started when I was about 15 with first-person shooter games such as Call of Duty and Halo. It is a hobby that I can always physically enjoy and is an activity I can still cooperate with friends on.

What is your favorite movie or book?
My favorite movie is “Stepbrothers” with Will Farrell. Movie is a hoot.

If you could live anywhere in the world, where would it be and why? I would want to live somewhere tropical probably on a beach with beautiful blue water and warm sand.

Are you a night owl or an early bird?

I am more of a night owl than an early bird. I enjoy how quiet and easier it is to focus at night.


Interviewed by

Brendan Halverson