Jeremy
About Me
Jeremy prioritizes staying as active as possible in his free time, emphasizing a “use it or lose it” mentality to fight against the disease. He consistently works out at the gym, where people often walk up to tell him he is an inspiration. Although he always must use a walker or a wall for support and relies on ankle-foot orthoses (AFOs) due to balance challenges, he doesn't let that stop his momentum. After past falls caused arthritis and floating cartilage, he has adapted his approach to mobility. Today, Jeremy enjoys playing board and card games with friends and socializing with others in the community and out in the world.
Diagnostic Journey
Jeremy grew up without ever receiving an ARSACS diagnosis, despite first receiving EEG testing at around age seven. Growing up, he experienced frequent falls and often sprained or broke his ankles, and doctors originally believed he had Charcot-Marie-Tooth, a progressive peripheral nerve disorder. Between 2003 and 2005, he underwent a biopsy of his left thigh at USC, where he was bluntly told he would eventually need a wheelchair. His definitive diagnosis finally came later when genome-exome sequencing was performed at UCLA in 2014.
Message to the Community
Jeremy's advice to those recently diagnosed is to not be ashamed to use a walker; while it may feel embarrassing at first, it is much better in the long run. He encourages others to "keep the blinders on" to focus on themselves, brushing off negative days to stay positive and optimistic. He highlights that managing the condition is a personal responsibility—advising others to take it one day at a time, eat healthily, not live in the past, and avoid blaming others. Importantly, he urges people not to isolate themselves, noting that finding community, such as going to church, is vital. He also validates the mental battle of the disease, reminding others that it is okay to fight those emotions and that there is absolutely nothing wrong with crying.
Message to Those Unfamiliar with ARSACS
Jeremy wants people to understand the intense mental and social battles that come with a visible disability. Living with ARSACS can sometimes be lonely, and he often feels like “an animal at the zoo” when people stare without wanting to know him for who he truly is. He has experienced bullying, including being given offensive nicknames at school before he even understood the cause of his symptoms. Today, strangers sometimes mistakenly assume he is drunk when he gets out of his car and tries to retrieve his walker. To combat these misunderstandings, Jeremy wears wristbands from the ARSACS Foundation to proactively spread awareness whenever people ask.
Hopes for the Future of ARSACS
Through sharing his story, Jeremy hopes to bring much-needed awareness to the disease. He strongly advocates that individuals with rare diseases need help and resources just as much as anyone else.