Name: Sydni Dupre
Age: 25
Where do you call home? Louisiana
What is your career? I am a full-time lifestyle influencer on social media. With my platform, I like to shed light on my life as a disabled young adult and wheelchair user, while also raising awareness about Friedreich’s Ataxia.
Who do you live with? I live with my husband.
What is a typical day for you? A typical day for me might involve waking up and going to physical therapy, meeting a friend for coffee or lunch, going to one of many doctor appointments haha, then staying at home with my husband and 2 dogs, and either filming or editing videos for social media or doing administrative work for my social media business on my phone/laptop while my husband cooks dinner, lastly watching my newest interesting tv show on Netflix until I go to bed.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed with FA when I was 10 years old, following my older brother.
Describe your transition you have had to take due to living with FA. I had a difficult transition going from walking to a wheelchair during my sophomore year of high school. I quickly lost all my friends once I started using a wheelchair and went from being outgoing with lots of friends to being very alone in my high school years. Although using a wheelchair helped me tremendously, it was not well-received or accepted by my peers. Teenagers can be cruel.
What do you like to do to stay active and what type of exercises work for you to stay strong? I currently am doing physical therapy (when my insurance lets me) and there I practice standing up from my wheelchair and taking steps, which I cannot normally do otherwise. At home, I use weights and resistance bands to work on my arm strength and core strength. Admittedly, I do not do much exercise because of my cardiac issues that come from FA.
Do you have any hobbies or special interests? I enjoy makeup and fashion, which is shown a lot on my social medias.
What is a good trick to learn make daily life easier? I already enjoy doing my makeup on most days, but it also allows me to practice my fine motor skills.
When FA gets you down, what do you think/do to feel better? When I am feeling down, my favorite thing to do is get dressed up and go out to eat with my husband or get iced coffee somewhere.
What is one way living with FA has affected your life in a positive way? FA has allowed me to have a platform on social media where others with disabilities and rare diseases can have a safe space to share daily lives and struggles, where more people get to learn about FA and disabled living, and also where I can possibly inspire millions of others.
What is a favorite motivational quote of yours? “It’s not that deep” — it is not necessarily a motivational quote, but it is something I always think about when I fall in public, make a mess while eating, drop something. I might start to get embarrassed but then remind myself, “it’s not that deep,” it is not that serious, no one really cares, nor will they remember it lol.
“I have FA, but FA doesn’t have me.” What does this statement mean to you? FA is just a part of you, it does not define you, so be whoever you want to be.
How do you live your life in the face of adversity? I remind myself that I only have one life, so I am going to try to make the best of it.
What do you wish the public understood about FA or disabilities? People with disabilities are regular people with the same interests and thoughts as everyone else, so we should not be treated any differently than everyone else.
Tell us a little more about you… I am a disability lifestyle social media influencer and content creator with over 1 million followers who enjoys makeup, fashion, and shopping. I got married 2 years ago, and my husband, Tony, and I have adorable French bulldogs named Billie Jean and Romeo.
Interview by
Sam Dupre