Friedreich’s Ataxia Awareness (FA) | Lived Experiences
May 17th is Friedreich’s Ataxia (FA) awareness. Everyone with FA goes through similar journeys but at different paces. Today, we wanted to highlight the different FA stages of Kiersten Riggs (22) and Hasitha Illa (29). In the end of all these differences, we are all so connected as a community and the same!💜
Hey everyone! I’m Kiersten Riggs, and I was diagnosed with Friedreich’s ataxia (FA) at 16 after my sister’s positive diagnosis. My symptoms didn’t fully set in until I was 19, and now I am 22
I’m in a phase where I can walk short distances unassisted but rely on a cane or someone’s support for longer distances. FA presents both physical and emotional challenges. One of the toughest struggles for me is the fear that people might not invite me places because they worry my FA will slow them down.
However, connecting with others in the FA community and learning to advocate for myself has made a huge difference. It has helped me feel less alone and given me a network of people who truly understand what I’m going through, no matter where they are in their own journey. 🫂
Hello guys! My name is Hasitha Illa and I was diagnosed at 10 years and right now, I am 29. Thats a good 19 years with Ataxia!
I’m at the stage where this disease has been with me way longer than most people ever have, LoL. But on a serious note, I permanently using a wheelchair and I would say, for the most part, I’m in good terms with it. But, it does still bother me sometimes for constantly being dependent on the smallest of things and that strong willed girl in me wants to scream. It’s taken a while but, I’ve accepted the fact that healing isn’t linear and, the way this disease progresses isn’t a cakewalk. But, surrounding yourself with the right people truly helps🤗
Kiersten and Hasitha have the same diagnosis but the way we deal with it and the experience we have are so different. All of our Lived Experiences are so precious and worth sharing. One post is not nearly enough to talk about this. But follow along for more such content ✨