Columns

Friedreich’s ataxia is physically challenging, but the mental aspect is often extremely debilitating as well. People are either afraid or unwilling to discuss their true emotions while dealing with such a serious illness. No matter how much you want to keep to yourself, you must know that whatever…

As my Friedreich’s ataxia symptoms progress, so do my feelings and emotions about this complex disease. When diagnosed, I accepted it pretty quickly. I obviously knew that something was wrong with me, so defining it helped validate what was happening to my body. Don’t get me wrong, in my younger…

Throughout history, fear of the abnormal has been deeply ingrained in the human psyche. Disability as a supernatural punishment In ancient times, impairment was believed to be the result of divine intervention. Seen as punishment for angering the gods, the only solution was exorcism or banishment. Alternatively, it was…

The last week of February was extremely busy here in Southern California for the FA and rare disease community. On Feb. 23, the Friedreich’s Ataxia Research Alliance/University of California, Los Angeles (FARA/UCLA) FA Patient Symposium was extremely informative. FA specialists, FARA, and pharmaceutical companies all gave presentations…

Disability can be an isolating experience, depending on its severity and a person’s willingness to look past it. Of course it’s incredibly isolating. Every single disabled experience is unique, and it can be hard to find able-bodied people who understand our daily struggles — who really empathize, and…

Until I recently had a discussion with a friend, I hadn’t realized how important the city of Los Angeles was for my outlook on having Friedreich’s ataxia. I realize now how extremely lucky I am to live in such a magnificent place with beautiful scenery, amazing weather, and…

Why is it so hard for some people to recognize that people with a disability are human as well, with the same needs and wants we all have? I have seen a lot of nonverbal people with a disability treated as if they are mentally incapacitated when they…

Its been a while since I have written for my column, and I apologize for the inconsistency to those of you who pay attention to “Fighting FA.” I had to take a break from writing for such a public audience because, to be honest, I just needed some…

When I met my husband Kyle in high school at the age of 16, everything was perfect. We were perfect. We were madly in love with limitless possibilities ahead of us. The world was our oyster and we couldn’t wait to “grow up” and start living. We got engaged in…

When I was younger, I just wanted to be healthy and able-bodied. When I went to sleep, I always dreamed of myself as walking; I never saw my wheelchair in my dreams. And when I was awake, I constantly imagined a future for myself in which my disability was no…

When diagnosed with Friedreich’s ataxia (FA) at the age of 25, I was devastated. I thought I would have really poor quality of life and that all of the plans I had for my future would be impossible. One of the biggest emotional topics was parenthood. I thought that having…

Growing up with a rare condition, I always relied on doctors and specialists to know how best to deal with my troubling body. Like most people, I left it to someone else to decide what I needed to do in order to feel better. As I’ve gotten older, I’ve had…