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:…
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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…
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…
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…
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…
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…
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…
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…
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…
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…
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.
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…
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