Columns

To parents with newly diagnosed children and those who have been in this fight for a while: I salute you. As an adult patient, I am not coming from a place of complete understanding because I do not have a child with FA. However, I do…

When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” Then, we receive more bad news: Currently, there is no treatment or cure. But there is a ray of…

A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down the anchor’s stem and “FA” at its base. A rustic brown cord loops through the top of the ornament…

Almost every day, I have a conversation with myself about the level of my own vulnerability on the internet. Is this comment too much? Should I discuss this topic? Does anyone care? I tend to get lost in an abyss of self-doubt and insecurity when sharing my life…

Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients named Kyle Bryant and Connor Sweeny, plus people who work for the Friedreich’s Ataxia Research Alliance (FARA). PTC Therapeutics is one of FARA’s gene therapy development partners. The day consisted of watching…

“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn phrases: Life is hard, messy, emotional, and unexpected, and it’s also predictable, inevitable, and complicated. But it can be…

Before I had a smartphone to help me pass the time, I was OK. I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused on a TV with the volume either blaringly loud or so quiet that I’d have to strain to hear…

I used to enjoy going to the grocery store. I loved picking out items, seeing what’s new in stock, and hunting good deals in the store’s weekly ads. However, grocery shopping has become physically challenging as my Friedreich’s ataxia slowly progresses. It’s tough to deal with the crowds and fatigue…

Sometimes we prefer not to be seen. I know how that feels. Growing up, I loved being almost invisible, whether I was pretending to be a spy or playing one of my favorite games with my cousins, hide-and-seek in the dark. I…

In a previous column, I wrote about the power of patient advocacy. I’m motivated to embrace advocacy in my everyday life to let the world know that disabilities come in all ages, shapes, and sizes, just like Friedreich’s ataxia (FA). This disease is extremely rare, affecting only 15,000 people…

At first, I resented having Friedreich’s ataxia (FA) because it hasn’t allowed me to be the mom I always imagined I would be. Now that I have a couple of years of parenting experience under my belt, I see some similarities between life with kids and life…

This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the underbelly of the LSU football stadium, known by Tiger fans as Death Valley. As I rolled through the Valley of Death, the lump in…