A Practical Guide to Life with FA - a Column by Christina Cordaro

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…

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…

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.

Did you know that one in 20 people will live with a rare disease at some point in their lifetime? Rare Disease Day, on Feb. 29, is a global initiative to help raise awareness of the more than 6,000 known rare diseases that affect an estimated 300 million…

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…

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…

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…

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…

Many people aren’t aware of how sensitive people with Friedreich’s ataxia (FA) can be about using a mobility aid. I struggle with feeling like a “minority” in society by standing out and looking different, so when people throw out negative words and actions, I feel awful about…

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…