Name: Lauren Riggs
Age: 21
Where do you call home? Tulsa, Oklahoma, but I currently reside in Norman, Oklahoma due to the fact that I am a student at OU (The University of Oklahoma).
Education (degree(s): How will FA add to your future [career]?: I am currently at the University of Oklahoma working towards my bachelor’s degree in Human Relations. After I graduate this year, I am going on to get my Masters. With all of my education, I want to be an advocate for Friedreich’s Ataxia to educate individuals on ableism and how to treat individuals properly with disabilities.
What is your relationship status? Who do you live with? I currently live alone in an apartment on campus. I love living alone because it gives me the freedom to be independent and take care of myself. I have been dating my boyfriend, Hudson, for about a year and a half. He is the most supportive person I have ever met in terms of FA, and it is truly heartwarming to see how he takes care of me as well.
What’s typical day for you? I currently work part-time as a Zoning Research Analyst for a commercial real estate company, and I am also a full-time student at the University of Oklahoma. So, I work Monday, Wednesday, Friday, and go to class on Tuesdays and Thursdays. I am also in charge of a committee for the Children’s Hospital Dance Marathon at my school and in charge of LEAD Team, which is a student council organization at OU.
How long have you known you are living with FA? I started to have some symptoms of imbalance toward the end of high school, but I was not diagnosed until my freshman year of college. I was diagnosed by a neurologist in Houston Texas, and I got the confirmation from my blood work on September 27, 2018.
Are there others in your family with FA? Yes, my sister Kiersten, who is two years younger than me, was diagnosed with FA as well. She was diagnosed about a month after me once we figured out that it was a genetic disorder.
What do you like to do to stay active and what type of exercises work for you to stay strong? I currently go to Physical Therapy two days a week. My physical therapist has been working with me for about a year, and she is incredible! I do mostly core, balance, and strengthening exercises. I also do many stretches for my muscles and on my feet due to my neuropathy as well.
Do you have any hobbies or special interests? I love watching romantic comedies and hanging out with my friends in college!
What is a good trick to make daily life easier? Set boundaries for your friends, family, employers etc. Let them know early on that you have FA and tell them that you may have certain days where you are fatigued and will not be able to commit to anything. It may be scary to tell someone about FA, but trust me they will be able to help you out so much better and you will have peace of mind when hard days come along because it is already off your shoulders.
When FA gets you down, what do you think/do to feel better? If I have had a hard day, taking a bubble bath and watching Mamma Mia 2 always makes me feel better! This is the first movie I ever watched that included a girl in a wheelchair during a big dance scene. This alone gives me comfort.
What is one way living with FA has POSITIVELY affected your life? FA has positively affected my life by giving me a new perspective. Each and every day I try to spend it with people I love doing the things that I love. Since being diagnosed, I have made it much more of an effort to genuinely live a life of joy.
What is a favorite motivational quote of yours? Proverbs 31:25 – ”She is clothed with strength and dignity, and she laughs without fear of the future.”
What is the best advice YOU could give to a person who has been newly diagnosed with FA? It is going to be okay. It can be difficult with a progressive illness to feel as though things will get better, but they truly do. The first month of me being diagnosed with FA was the most difficult simply because I did not know anyone in the FA community yet. But I started to meet people with FA and go to rideATAXIA or other FA events, and it helped me because I knew there were other people around me going through the same exact thing and it was relieving to be able to have someone else out there who can understand my struggles.
What’s the first thing you want to do when a treatment/cure is discovered? The first thing I would want to do is to thank my parents for how encouraging and steadfast they have been throughout this entire journey. Then I would go run a marathon haha!
“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? With FA, you are definitely going to have days that are more difficult than others, and in these days it is important to have a good support system around you that can encourage you and uplift you even through your trials.
Interview by
Christin Haun