Name: Carly Melissa Stinson
Age: 37
Where do you call home? Currently: Nashville, TN; Home: Orlando, FL
What degrees or certifications have you earned through your educational or professional journey? I went to cosmetology school when I was 19 and held a cosmetology license. I also have a bachelor’s degree in business and leadership from Valencia College. Lastly, I hold a 2-20 insurance license in multiple states.
Who do you live with? I live independently in an ADA accessible apartment with my dog Bentley and my cat Mika!
What’s a typical day for you? I was recently diagnosed after over a decade of symptoms. I just left my full-time insurance career with Progressive. I am in a ‘becoming’ stage of figuring out what’s next career-wise. A typical day currently includes working out, adaptive sports, reading, spending time with family, and exploring Nashville, as I recently moved here to seek out a diagnosis at Vanderbilt!
How long have you known you are living with FA? When and how were you diagnosed? I have been symptomatic since 2010 and was diagnosed in August of 2025 at Vanderbilt in Nashville, TN, through genetic testing via bloodwork.
Are there any others with FA in your family? No, I am the only person in my family with FA.
What was your diagnosis journey like? I was a dancer/performer at Walt Disney World in 2010 when my symptoms began. I was 21 and started feeling dizzy, off balance and uncoordinated. It wasn’t very noticeable to others at first, but I felt it when dancing or riding a bike. By 2014 I called my mom in a panic because going downstairs was “hard” and felt scary. I first was referred to an ENT in Orlando, FL, and was misdiagnosed with Labyrinthitis and Disequilibrium. At the time I was working 2 jobs and in college. I took a LOA from work for 3 months and did vestibular rehabilitation in 2015. I went on another year trying to get through work, taking medication, and things kept getting worse.
By 2016, I was walking with a wide gait pattern and noticeable limp to my dominant side. I had to search for an office job because I couldn’t stand, lift, or apply makeup to clients any longer. I found a full-time job in insurance, got licensed and had a 10-year career in insurance. I went through testing in 2016-2017 looking for MS. I had an MRI, nerve conductions, a spinal X-ray and spinal tap. Of course, nothing showed up and I was told I had GAD (generalized anxiety disorder) and was put on a combo of anxiety drugs.
In 2018, I was desperate. My boyfriend at the time always held onto me in public and friends had to take my arm in public. I had moved to Tampa, FL, shortly after and moved my office and another employee with me. It was then late 2019 and I couldn’t use stairs, actively using walls and furniture to navigate my home and waited every morning in the work parking lot for the other employees to arrive and hold my arm to walk me into work. During this time, I went to infectious disease doctors, cardiologists, neurologists, spinal specialists, kinesiologists and eastern medicine doctors. I ended up getting a dog stroller and started taking my dog everywhere just to use the stroller to walk with assistance. In 2020, I moved back to Orlando and falls increased.
I weighed down my dog stroller with weights to increase stability. By 2021, I was diagnosed with neurological Lyme disease and co-infections, which complicated my health journey significantly. I finally got my first walker. I used the walker through Lyme treatment. Fatigue from using only the walker was catching up to me, and my mobility was worsening. I relocated to Nashville, TN, to attend Vanderbilt and live near my parents.
I was diagnosed with FA within 1 year from relocating. My neurologist recommended a manual wheelchair, which has brought back enjoyment when going out socially. I do use the walker in my home unless I’m doing laundry or chores. I use the wheelchair for safety and avoiding falls. I also use a power chair only for travel or stadium events.
What do you like to do to stay active, and what type of exercises work for you to stay strong? I love to workout. I go to my gym 2-3 times a week for weightlifting and seated cardio (split ropes or battle ropes). I recently started Pilates once a week and adaptive rock climbing twice a month! Also, I stretch daily!
Do you have any hobbies or special interests? I love reading, writing/journaling, traveling, and doing Italian language class once a week! I also like trying new things. Recently, I took a pottery and watercolor class!
What is a good trick to make daily life easier? Don’t rush! Give yourself patience and time. Keep pivoting and learn how to figure out or troubleshoot problems as they arise – there is always a way!
When FA gets you down, what do you think/do to feel better? I let myself feel my emotions for a moment, then ultimately remind myself this is a unique challenge and I can handle this as I do every day. Focus on the now, not the past or future but the present moment.
What is one way living with FA has POSITIVELY affected your life? It has made me learn all the parts of myself and what I’m capable of. It has also expanded my life vastly and opened my eyes to an entire community of strong and amazing people.
What is a favorite motivational quote of yours? “You have been assigned this mountain to show others it can be moved.” – Mel Robbins
What is a piece of advice that someone with FA has given you that encourages and inspires you? There is still a life after diagnosis, it’s just going to look different!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Give yourself grace and time to process but just know there is a community, support and friendship when you’re ready.
What is the first thing you want to do when a cure/treatment to FA is found? DANCE and walk/run on the beach!
“I have FA, but FA doesn’t have me.” What does this statement mean to you? FA doesn’t define me. I have FA, it’s a part of me along with the many other parts of me.
How do you live your life in the face of adversity? I live a BIG life. I choose to go through this world confidently because I’m meant to be here!
Tell us a little more about you…. I love animals, reading, baking and fitness. I’m an aunt to my 2 amazing nephews. I love art, fashion, and creative outlets especially through makeup artistry.
I love to travel and learn. My favorite memory is studying abroad in Italy. I don’t take life too seriously!
Interviewed and Edited by
Noah Griffith