Author Archives: Frankie Perazzola

10 Lessons I’ve Learned from Having FA

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…

A Letter to My Endlessly Loving Mother

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…

In Case of Emergency, Don’t Have a Disability

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…

How a Television Show Changed My Thought Process

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…

It’s OK to Be Honest About Your Emotions

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…

Moving Out Despite Friedreich’s Ataxia

Following my Friedreich’s ataxia diagnosis in June 2015, one of the first things the doctors told me was that I would progressively lose my ability to live independently and that I would need assistance in almost every aspect of life. The diagnosis alone was already a lot to…

My Experience with Advocacy in Baltimore

Part of the advocacy realm that I truly enjoy is the opportunity to travel to new places and speak to different groups of people. At the beginning of March, I had two speaking engagements in Baltimore, Maryland. The flight from Los Angeles was five and a half hours…

Your Diagnosis, Your Choice

Friedreich’s ataxia is physically challenging, but the mental aspect is often extremely debilitating as well. People are either afraid or unwilling to discuss their true emotions while dealing with such a serious illness. No matter how much you want to keep to yourself, you must know that whatever…

FA Weekend in SoCal Was Inspiring

The last week of February was extremely busy here in Southern California for the FA and rare disease community. On Feb. 23, the Friedreich’s Ataxia Research Alliance/University of California, Los Angeles (FARA/UCLA) FA Patient Symposium was extremely informative. FA specialists, FARA, and pharmaceutical companies all gave presentations…

A Love Letter to the City of Angels

Until I recently had a discussion with a friend, I hadn’t realized how important the city of Los Angeles was for my outlook on having Friedreich’s ataxia. I realize now how extremely lucky I am to live in such a magnificent place with beautiful scenery, amazing weather, and…

Friedreich’s Ataxia Patient Spotlight: John Cernosek

Meet John Cernosek from Maryland! John lives in Silver Spring with his beautiful girlfriend, who also happens to have FA. He’s 34 years old and was diagnosed with Friedreich’s Ataxia at the age of 19. His responses to these questions were eye-opening and we enjoyed reading his perspective…

Common Decency Isn’t Too Far-fetched

Its been a while since I have written for my column, and I apologize for the inconsistency to those of you who pay attention to “Fighting FA.” I had to take a break from writing for such a public audience because, to be honest, I just needed some…

Friedreich’s Ataxia Patient Spotlight: Laura Wright

The Friedreich’s Ataxia Patient Spotlight is another method of raising awareness for Friedreich’s Ataxia. With an understanding of a rare disease and how crucial it is to get the word out, we are excited to share people’s stories and perspectives from all over the world. This week, coming to you…

Friedreich’s Ataxia Patient Spotlight: Madelyn Frederick

Since there are 15,000 people who share the same genetic mutation, also known as Friedreich’s Ataxia, it’s important to share each other’s stories and perspectives. The FA community is bigger and closer than most people think — patients are diagnosed at different ages, stages and various locations all over the…

How to Find Your Coping Mechanisms

Let’s just put it all out on the table: depression and anxiety come with having Friedreich’s Ataxia. The sadness, frustration and angst that you feel is legitimate and is shared with every other FA patient. The mental health aspect can be just as debilitating as all the other major health complications…

Before the #CureFA Mission

  Happy New Year to all of you! I hope 2018 has been treating you well so far and that you’re working toward your new set of goals (or existing ones). One of my goals every year, much like many of my peers, is to raise awareness for…

3 Tips for Explaining Your Disease

In today’s world, it’s become a trend to share every detail of your life — people always want to hear your story. No matter who you are, people are more curious than ever and like to engage in more meaningful conversations. Maybe it has to do with the popularity and…

Becoming the Best Version of Me that I Can Be

With the year coming to an end and Christmas coming faster than ever, I’ve become more reflective on what memories 2017 holds. Every year, I find myself saying, “Wow, I never thought I’d be here.” And yet, here I am again, repeating that tradition. 2017 was filled with…

Why Patience Is So Important When You Have FA

Friedreich’s ataxia has numerous levels of frustration that can sometimes be maddening. The fact you have to depend on someone else to live your life definitely causes tension and can be debilitating in itself. You never feel refreshed after a decent night’s sleep, which affects the amount of effort you…

Common Communication Issues When You Have FA

As an FA patient, it can be difficult to effectively communicate your exact needs, hesitations or fears to those whose help you need the most. It can seem nearly impossible to tell family, friends, doctors, caregivers and others what you want. No matter how much your speech is or isn’t affected,…

Always Adapting

I have learned that living with FA means constant heartbreak and adaptation. For example, I have had to go from using a cane to a walker in the span of two years. I went through the entire process of accepting that I needed a cane, getting the…

How to Find Your Motivation When You Have FA

When it comes to getting out of bed or starting your day, it can be difficult to do just that. It’s much easier to stay in your pajamas all day than to go through the process of getting ready and going out in public. It’s a whole different process for…

Sorting out Your Relationships

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…

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…

Why I Choose to Participate in Clinical Trials

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…

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…

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…

Even in a Maddening Answer, a Sense of Relief

“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…

Life, Disease, and Renewed Hopes and Dreams

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…