I graduated with a degree in system and information engineering from the University of Virginia (UVA) and am currently pursuing a master’s degree in system engineering at Cornell University. I was diagnosed with Friedreich’s Ataxia (FA) when I was 18 years old.
Even though I had symptoms since the age of 12, it wasn’t until my senior year of high school that I realized that my condition was serious. After undergoing rigorous testing, seeing a multitude of doctors, and receiving some misdiagnoses, I was finally diagnosed with FA, a degenerative genetic disorder. I had never heard of FA before, but it was about to change my life drastically. As I learned more through in-depth research into the disorder, I became depressed about my future. I graduated from high school a couple of weeks after my diagnosis. With what I knew about FA, I did not think I would be successful at college, although I did not tell anyone that.
Regardless of knowing that failure was a possibility, I continued my education with the same confidence in my abilities that I have today. I always knew and trusted my abilities, but my FA progression and how it would impact my education and life was always a question.
I gained tremendous support from family, friends, professors, advisors, career counselors, doctors, physical therapists, and especially from the Student Disability Access Center at UVA. That support helped give me the confidence needed to achieve greatness despite obstacles I face. With their support, I have been successful—participating in multiple internships and initiating many projects.
I also started a Facebook page called “Fight Against Friedreich’s Ataxia,” which now has over 3,000 members. Many of them are also experiencing life with FA, and they have been willing and courageous enough to share their unique stories with us. The page serves as a support group and helps raise awareness about Friedreich’s Ataxia.
I actively participated in the Disability Awareness Week at UVA – organizing and planning events and encouraging my peers to attend. I continue to raise awareness about inaccessibility and negative messages about disability at UVA and Cornell University.
Although FA may have slowed me down, it has also taught me valuable life lessons. Ultimately these challenges and my experiences have made me who I am today, and for that I am grateful.