The downside of social media prompts my exit

It’s better late than never, but I finally figured it out — or rather, at last I admitted to myself that a certain pursuit was a complete waste, something that was draining and devaluing my personhood. And this time there would be no compromise: Social media was a dead end…

I’m Thankful for So Much, Even With Friedreich’s Ataxia

2020 has been a wild year. Thanks to the pandemic, growing civil unrest, and a tumultuous and pivotal presidential election, we are all leading a life we didn’t anticipate or plan for. Add in a progressively degenerative disease like Friedreich’s ataxia (FA), which doesn’t pause to consider any external…

Behind Closed Doors: Why I Share the Reality of FA

I am an open book about most areas of my life. I’ll answer just about any question I am asked, even questions about my Friedreich’s ataxia (FA). FA is a rare, progressive, degenerative neuromuscular disease that few people have heard of, and even fewer are truly knowledgeable about.

Instagram vs. Reality with Mobility Aids

Because of my Friedreich’s ataxia (FA), I use a walker as a mobility aid. The walker helps provide the stability that I can’t accomplish on my own, which helps prevent falls. My walker is with me wherever I go, so I am pretty well-known for being “the mom…

Video: Bionews’ Social Media Campaign Highlights #WhatMakesMeRare

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…