Last week, I sat with my service dog near my home’s entrance, waiting for public transportation to take me to a doctor appointment. It was a cool fall day with drizzling rain — the kind of day that made me want to cancel the appointment and cozy up by the…
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I recently came across this wise advice from 1 Peter 3:10: “If you want to enjoy true life and have only good days, then avoid saying anything hurtful, and never let a lie come out of your mouth.” It prompted a self-reflection that really convicted me. Saying hurtful things or…
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People with Friedreich’s ataxia (FA) develop thickening of the heart muscle wall early on, followed by a gradual decline in pumping function that can take up to three decades to appear, according to a study that examined more than 25 years of echocardiogram records from nearly 600 FA patients.
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When I was diagnosed with Friedreich’s ataxia (FA) in 2013, my family and I had never heard of the disease. So we had a lot to learn about this new, lifelong character that was now a part of our story. My father, the kindest, wisest, and most generous and…
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A new documentary chronicling the story of two men with Friedreich’s ataxia (FA) as they undertake a seemingly impossible athletic endeavor — cycling across mountains, with a rare muscle disease — will premiere at a film festival in California later this month. The movie, “The Highest Road,” is…
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Lately, it seems like my journey with Friedreich’s ataxia (FA) has been a major focus of my life. Between sustaining three fractures in nine months, meeting new people, and refusing to let my symptoms dictate how I spend my time, I’ve had to accept and adapt to many…
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Becoming educated and informed about FA is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your FA journey.
There is no cure for FA yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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