Columns

I was diagnosed with Friedreich’s ataxia (FA) at age 25. Because FA is so rare, my neurologist had limited information to share with me. I’d never heard of the disease I’d now be fighting for the rest of my life, so I did what anyone would do: I…

When our youngest daughter, Amelia, was 5, she hung twine throughout her bedroom. Then she arranged blankets on top of the strands to create an elaborate tent with sections for rooms. I’d never seen anything like it. It was one example among dozens over the years of how Amelia looks…

When I explain Friedreich’s ataxia (FA) to people, I adjust my verbiage depending on who I’m talking to. If my children or their friends ask why I use a walker, I’ll explain that my legs don’t work very well and I use the walker to help me avoid falling…

Much like fingerprints, many experiences are similar at a glance but unique upon closer examination. This is especially true in the rare disease community. Although our conditions are very different, we have many things in common. This has been on my mind recently due to an unexpected source. My friend…

“So, does it ever get easier?” My eyes slid off the curly mop of brown hair belonging to a curious toddler and up to the questioning eyes of her mother. Pulled in by the pile of snacks my girls had left out on the picnic table, the 3-year-old had come…

From the minute I wake up each morning, my disability and limitations are in my face, demanding attention, adaptation, and adjustment. In other words, I’m not allowed a moment of bliss when I can forget that I have Friedreich’s ataxia (FA). I guess you could say that feeling…

Note: This column describes the author’s and interviewee’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Hope is crucial for those in the Friedreich’s ataxia (FA) community. For me, facing a rare degenerative…

After nearly a week of learning to use my new wheelchair, it was time to venture out in public. Why, you may wonder, did I hesitate? And why dramatize such a trivial thing with such foreboding language? When the chair arrived, and after I was finally able to sit in…

As August marches onward, the memes around children returning to school abound. But the ads for back-to-school sales have triggered a new feeling in me this year, and it’s unpleasant. Once again, our 11-year-old daughter’s diagnosis of Friedreich’s ataxia (FA) has made normal feelings abnormal. Surrounded by other parents,…

On Aug. 19, 2013, my world was turned upside down as my five-month diagnostic journey came to a shocking conclusion: I had Friedreich’s ataxia (FA), a cruel, progressively degenerative genetic disease I’d never even heard of. Some days, it feels like I’ve been managing the symptoms for…

I feel fortunate that I still enjoy a lot of independence and mobility, despite Friedreich’s ataxia (FA). My progression has been slow and mild compared with many folks with the disease. I’m 42, my heart is healthy, and I still walk. Although I started using a rollator a few…

While the research on the benefits of mindfulness is strong, my ability to engage in the practice is weak. I’ve discussed the positive outcomes of being present as a professional and then, in my personal life, tackled my never-ending to-do list like it’s a race. This builds up an anxiousness…