Practical Guide to Life with FA — Christina Cordaro

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…

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…

Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients named Kyle Bryant and Connor Sweeny, plus people who work for the Friedreich’s Ataxia Research Alliance (FARA). PTC Therapeutics is one of FARA’s gene therapy development partners. The day consisted of watching…

I used to enjoy going to the grocery store. I loved picking out items, seeing what’s new in stock, and hunting good deals in the store’s weekly ads. However, grocery shopping has become physically challenging as my Friedreich’s ataxia slowly progresses. It’s tough to deal with the crowds and fatigue…

In a previous column, I wrote about the power of patient advocacy. I’m motivated to embrace advocacy in my everyday life to let the world know that disabilities come in all ages, shapes, and sizes, just like Friedreich’s ataxia (FA). This disease is extremely rare, affecting only 15,000 people…

I recently saw a news article about a bridal store in England that not only made a positive impact on one future bride’s life but also on others’. The White Collection Bridal Boutique displayed a mannequin in a wheelchair while wearing a wedding dress. Someone posted a photo of it on…

Everyone has a morning routine, a plan that sets the mood for the day. Most people become so used to the regimen that they carry out tasks on autopilot. However, when living with a rare, neuromuscular disorder such as Friedreich’s ataxia, the routine can become irregular and require additional concentration,…

An approaching new year means multiple things to different people. A new year can mean starting over or aspiring to new goals or resolutions. It is an appropriate time to be happy and to seek a fresh start to be the best version of yourself. Regarding life with Friedreich’s ataxia,…

Let’s talk about what to do during the “calm before the storm.” And no, I am not talking about going to the grocery store during the holidays to fight through fanatical crowds for butter, milk, and eggs. I am talking about how to take advantage of calm days to prepare…

Editor’s note: This column discusses what has worked for Christina Logan, but others may not have the same results. Second in a two-part series. In last week’s column, I discussed how fatigue is a Friedreich’s ataxia (FA) symptom that has gotten the best of me. Every day, I internally…

Editor’s note: This column discusses what has worked for Christina Logan, but others may not have the same results. First in a series. Recently, I implemented two major life changes for the elimination of my fatigue associated with Friedreich’s ataxia. Over the next two weeks, I will share these two…

Thanks to Friedreich’s ataxia, I’m never more anxious than in an open crowd in a big space. While feeling hopeless and lost in space, a lot of mixed emotions and questions run through my head: “Will I be able to transport through the crowd OK, or will I lose my…