Fighting FA — Frankie Perazzola

Let the New Year’s resolutions and “fresh start” cliches pour in to overwhelm timelines and news feeds. Ringing in the new year has always been a favorite time of mine — the energy shifts. Many people, including me, desire to change and become “better.” When thinking about resolutions, I…

  With more than 7,000 known rare diseases in the world, it’s impossible to have all humans acknowledge and learn about every single one. No matter how life-threatening, debilitating, or serious a disease is, the hard truth is that if it doesn’t affect a large group of…

Do you ever experience times when being social in any form is out of the question? When engaging in online or in-person conversation is draining, or when the thought of going out just seems unimaginable? It’s not necessarily depression, because it’s not as heavy, but you…

Over the past couple of weeks, I’ve had some good conversations with FAers and others about life. I was asked similar questions in each conversation, so I figured those topics must cross other people’s minds. Perhaps my answers can give you insight into my personality and who I…

It’s funny how cliches about life have started to make sense to me. From my observations of other rare disease communities, I’ve learned that when we reach a certain level of acceptance about our disease we gain a different understanding of life. When expressing myself, I try to…

Over the past few years, I have learned that Friedreich’s ataxia (FA) patients come to terms with their diagnoses in their own time. At first, I didn’t understand why some patients kept a distance from the FA community and the Friedreich’s Ataxia Research Alliance (FARA). I couldn’t…

Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your birthday, not Mother’s Day — “just because.” At first, I couldn’t write a word without crying, but eventually everything spilled out so naturally. First…

It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete disregard for people with special needs in emergency preparation. I hadn’t been in an evacuation situation since before my diagnosis, so this was an eye-opening experience. The alarm went off at…

I often have conversations with others about the mindset and positive outlook I attained while dealing with this illness. Although I realize this may be temporary and my attitude might change — as it has before — I’ve truly recognized that there are low phases that I…

Birthdays used to be so fun for me. Now, though, they are just reminders that this disease is taking over my physicality slowly. While I have a positive attitude most of the time, I can’t help but think of my progression on each birthday since my diagnosis…

Last month was Mental Health Awareness Month, so I thought this might be a good time to discuss this issue head-on. Some days can be harder — way harder — than others. Every single person on earth has problems and horrible situations they deal with throughout their…

It’s been tough lately. Just when I thought there was a light at the end of my depression tunnel, it got dark again, and I found myself having to start over. Many things attributed to my downward spiral, including the end of a relationship, being responsible for breaking…