Author Archives: Christina Cordaro

Podcast Series Promotes FA Advocacy

The world celebrated Rare Disease Day on Feb. 29. Rare Disease Day is a global initiative to raise awareness for over 6,000 rare diseases that affect an estimated 300 million people worldwide. This year’s message was: “Rare is many worldwide. Rare is strong every day. Rare is…

Accessible Stalls Are More Than a Convenience

Living with Friedreich’s ataxia (FA) has taught me to appreciate the little things. I was reminded of this when I discovered a new symptom of my FA journey: bladder control and the urgent need to use the restroom when away from home. Public restrooms have become a significant need in…

FA Community Bonds Are Strong Even When We’re Far Apart

I remember meeting my dear friend Mary for the first time. Mary also has Friedreich’s ataxia (FA) and is the mother of four beautiful children. Five years ago, I attended the annual Friedreich’s Ataxia Symposium hosted by the Children’s Hospital of Philadelphia. It was my first time attending the conference.

Treat Others as You Want to Be Treated

I have a chip on my shoulder from living with a rare neuromuscular disease. I feel the need to be accepted and welcomed by today’s society, and I set high expectations for the people I meet. But I have come to realize that people with disabilities need to treat others…

Massage Therapy Helped to Relieve My Stress and Pain

Sometimes we need to take a break, to relax and breathe. Many stresses can affect young adults, including money, work deadlines, cost of living, and family issues, among others. When you add living with a chronic illness like Friedreich’s ataxia (FA), anxiety and worry can easily test you. The…

6 Ways to Stay Active During the Winter

Have a case of the winter blues? Cold weather can make anyone want to hibernate under a warm blanket and never leave home. When living with Friedreich’s ataxia, nothing sounds more comforting than staying inside instead of having to leave and deal with self-doubt and insecurities. It doesn’t take cold…

We Have Much to Consider When Growing Our Family

Marriage is wonderful, but it comes with challenges. When one partner has Friedreich’s ataxia (FA), the challenges may be overwhelming. Now imagine the second partner also lives with a chronic illness. My husband, Justin, has Fabry disease. Like FA, Fabry is a rare genetic disorder. It results in a…

A New Year Creates New Opportunities

Happy New Year! I hope all my readers had a great holiday with their loved ones and are ready for 2020. I had three main goals for 2019 regarding the progression of my Friedreich’s ataxia (FA): accept help when needed; know that my disease is in…

A Guide to Managing Stress During the Holiday Season

It’s the most wonderful time of the year! Isn’t that what everyone is singing and saying? Christmas music is playing wherever you go, houses are decorated with lights, and the aroma of wood fires fills the cold, winter air. It is also a time of gift-giving, marketing campaigns, parties, and…

Showing Gratitude for My Loved Ones

Since my diagnosis with Friedreich’s ataxia (FA), I have learned something about myself. I realize that when making plans, I must consider my needs, including accessibility, and I try to help other people understand, too. When I arrange an outing with my family or friends, I easily become anxious and…

This Year, I Am Thankful for Friedreich’s Ataxia

Every fall, I find myself being thankful for my family and friends and hoping that they are in good health. I am also grateful for the relationships I have with other Friedreich’s ataxia (FA) patients and their families. These individuals leave me full of gratitude, not only because they teach…

The Time Was Right for My Own Wheelchair

“It is time,” I thought to myself. A number of loved ones had presented the idea of transitioning from a rollator to a wheelchair out of concerns for my safety. But I believe it’s a decision that should be made by the patient. Recently, I came to terms with the…

Rediscovering My Passion for Baking

I recently rediscovered my passion for baking. My hopes and dreams should not be put on hold because of Friedreich’s ataxia (FA). I should not be discouraged from doing what I love. I take satisfaction in knowing I can enjoy an experience like everyone else, even if I have to do…

Bucket List Means More When Living with FA

My passion for the hospitality and tourism industry has shaped my bucket list. I love to travel and explore new cities. During high school, I traveled to Europe three times with my school musical groups. It was an honor to visit Italy, England, and Ireland. Since being diagnosed with Friedreich’s…

FA Events Give Us a Sense of Community and Belonging

October is my favorite month. I love the feeling of new beginnings that comes with the crisp fall air. And I’m excited about two major Friedreich’s ataxia (FA) events that take place this month: rideATAXIA Philadelphia and the annual Friedreich’s Ataxia Symposium hosted by the Children’s Hospital of…

3 Reminders for Living with an Invisible Disease

Living with an invisible disability is not easy. Symptoms that cannot be seen are difficult for outsiders to understand. Friedreich’s ataxia (FA) entails neurological issues, heart conditions, fatigue, and chronic pain. Some patients may use mobility aids full time, part time, or not at all. Each person with…

Fatigue Is One of the Most Difficult Symptoms I Deal With

Friedreich’s ataxia (FA) patients face multiple symptoms that can help confirm a diagnosis. The five most common symptoms are difficulty walking, sensory changes (such as hearing loss, involuntary eye movements, vision impairment, and speech problems), scoliosis, diabetes, and heart failure. FA patients are affected differently by these…

4 Solutions to Beat the Heat with FA Symptoms in Mind

Summertime is all about enjoying the outdoors with warm weather on your skin. The season is full of barbecues, family picnics, festivals, and more, with the people you enjoy most. Everyone needs to take precautions when in the heat. But the symptoms of Friedreich’s ataxia (FA), combined with the heat,…

4 Physical Therapy Strategies That Help Me

Since receiving my diagnosis of Friedreich’s ataxia (FA) back in 2011, I have attended two series of physical therapy sessions. I was an outpatient at the local University of Pennsylvania hospital branch in 2014 and 2017. Initially, when I went in 2014, I wanted to familiarize myself with…

A Tribute to My Dad for Father’s Day

Last Sunday was Father’s Day. One dedicated day to honor each of our parents is not enough in my view. Parents are often role models who are always there for their children with unconditional love — this is particularly true of those who have a child with Friedreich’s ataxia (FA).

Visiting a Historic Farmhouse for a Good Cause

I am originally from Bucks County, Pennsylvania, about 25 miles outside of Philadelphia. This beautiful area combines countryside with villages and downtown charms. It is rich in history, art, and culture, with gourmet dining, breweries and wineries, and award-winning accommodations. When I describe the area to people, I classify it…

Rain Won’t Stop Us from Curing FA!

After months of planning and executing, my family’s grassroots event, the 7th Annual Mother’s Day 5K Race for Christina, took place last Sunday, May 12. Two months ago, I wrote the column, “How to Plan a Grassroots FA Event,” which includes our planning checklist. My family and I…

On Being a Bridesmaid for a Day

I remember feeling overjoyed and honored a year ago after I received a package in the mail. It was a small box containing beautiful gold-knot post earrings and a note that said, “Will you be my bridesmaid?” It was from one of my closest friends, Erica. Without a second thought,…

It’s OK to Accept Help When You Need It

Living in a major city like Philadelphia, my go-to mode of transportation is the subway or the bus. My husband, Justin, has a car he parks close to our apartment to have available when needed. But if I am on my own or need to get somewhere close, I…

Celebrate Your Victories, No Matter How Small

When living with Friedreich’s ataxia, one learns to accept “what is” and to celebrate small victories. For example, I have recently discovered that cleaning and tidying up around my one-bedroom apartment in Philadelphia is a very rewarding victory. I express this because though it may seem like a…

Thankful to Get Expert FA Care for My Checkup

I had my annual Friedreich’s ataxia checkup last week at Children’s Hospital of Philadelphia, which hosts a Friedreich’s Ataxia Center of Excellence for patients and their families. I’m very fortunate to have this facility and my doctor right in my “backyard” of the city that I call…

How I Stay Active in Each Season of the Year

Daylight saving time happened last weekend, and the changing of the clocks heralded in longer days and warmer weather. I am eagerly anticipating the first day of spring on March 20, and the new season cannot arrive soon enough for me. Although my home city of…

How to Plan a Grassroots FA Event

Rare Disease Day was observed on Feb. 28. However, we don’t have to limit our advocacy to a single day. Every day is an opportunity to use our voices to raise awareness and educate those who may be unfamiliar with the rare disease and Friedreich’s ataxia communities.

Alone We Are Rare, but Together We Are Strong

People around the world observed Rare Disease Day on Thursday, which gives patients, caregivers, and advocates the opportunity to share their experiences and raise awareness of the more than 7,000 known rare diseases. Rare Disease Day is organized here in the U.S. by the National Organization for Rare Disorders…

Managing Fatigue in the Workplace

In a given week, a full-time employee can work five days and 40 hours or more. With all of these hours, it can feel as though a workplace has become a second home. Pursuing a career that requires at least 40 hours a week can take a toll on…