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Shandra Trantham

Shandra 1 Name: Shandra Trantham

Age: 24

Where do you call home? Gainesville, FL

Education (degree(s): I’m starting my 5th year as a PhD candidate in Genetics with the hope of graduating next year. FA has positively influenced my perspective as a researcher, and I ultimately want to continue to bridge the patient and research communities as well as branch out more into advocacy.

Who do you live with? I live in an apartment with my service dog, Abbey, and one of my best friends who also has FA, Christian Maugee.

What's a typical day for you? A typical day for me includes getting up early, feeding/walking Abbey, spending all day at work/school, then coming home to clean, make dinner, relax, and volunteer for FARA.

Shandra 2How long have you known you are living with FA? I was about to turn 9 when I started having noticeable issues with balance, but I wasn’t diagnosed until 12 when my inability to walk in a straight line was very apparent, and I had rapidly-progressing scoliosis.

Are there any others with FA in your family? No

Describe your transition from walking to walker/wheelchair. I refused walking assistance until age 20 when I started my PhD and knew it would be unsafe for me to “wall walk” in a science lab. Now, 4 years later, I still use a walker and will do whatever I can to keep my feet on the ground.

Shandra 3What do you like to do to stay active and what type of exercises work for you to stay strong? I go to PT 1-2 times a week and only walk at work/school. I believe these things keep me strong!

Do you have any hobbies or special interests? I love to play Pokemon GO and be outside.

What is a good trick to make daily life easier? I live my life like I don’t have FA. If all you do is think about the things you can’t do, you’ll never enjoy the things you can do.

What is one way living with FA has POSITIVELY affected your life? I used to be very shy, but FA has made me outgoing and unafraid of speaking to any audience.

When FA gets you down, what do you think/do to feel better? It’s hard to stay down with all of the incredible scientific advancements happening!

Shandra 4What is one way living with FA has POSITIVELY affected your life? I used to be very shy, but FA has made me outgoing and unafraid of speaking to any audience.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Stay on your feet for as long as you can!!

"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? An FA diagnosis is not a contract of the life you’ll experience. Like any other adversity, it will definitely change some details, but ultimately you are in charge of creating the outline of your life. So I created one that makes me happy!

What is the first thing you want to do when a cure/treatment to FA is found? When a cure or treatment is found, I want to run on the beach into the ocean.

Interviewed by
Interviewed by Andrea Kiess


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