The ultimate test of any type of relationship in my life began the day I was diagnosed with FA. Friendships, family ties, and intimate relationships were all put through the ringer once I knew I was facing a life-shortening illness. Everyone copes differently with bad news, and miscommunication…
Fighting FA - a Column by Frankie Perazzola
Columns
Dishing Up Anxiety
You know that feeling when you’re at a store and the cashier gives your change back and a couple of people are behind you? It seems like you can’t put away your change fast enough. Imagine that feeling for hours. That is like the anxiety I feel when…
You can ask my entire family — they’ll tell you I was fully willing to participate in clinical trials from day one. I’m assuming it was a combination of the previous minimal research I had done before my diagnosis, being an adult (or being older because, let’s face it, 22 is…
Columns
Call It FA-tigue
It’s not something a Red Bull or cup of coffee can fix. Pre-workout only goes so far. No matter what I do, it’s completely exhausting. After doing a load of laundry, I need to sit down and recover. And I mean, sit down for about 20 minutes to…
If you look at the walls in my house, they are riddled with fingerprints. When I am asked about my stage of progression and my mobility, I say that I am a tapper. I navigate through my house by tapping on the walls and furniture…
Columns
A Page for Paige
Until recently, I genuinely thought I had a grasp on my life-shorting diagnosis. I lost that grip the moment I heard a fellow FARA Ambassador had suddenly passed away. Paige Myers was the most loving, sweetest, smartest person with a heart of pure gold. By no…
“Why can’t you help bring in the groceries?” “Are you that lazy?” “Are you that drunk, already?” “Why are you so tired all the time?” “Why do you always stay in your room?” I couldn’t bare not having the answers to these questions and…
As a kid, I shared similar career aspirations as my friends ― astronaut, marine biologist and lawyer were my top three. With high hopes and a head stuck in the clouds to match, I was going to space to save Earth from a meteor, help all the endangered…
Recent Posts
- When I focus on what I can control, problems become opportunities
- Researchers spot new ultrasound patterns across peripheral nerves in FA
- I try to control others because FA has left me with so little that I can control
- Using my unexpected platform to be a positive role model
- First person in FA FALCON trial receives SGT-212 gene therapy dose