In Case of Emergency, Don’t Have a Disability
It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete disregard for people with special needs in ... Read more
Updates
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Don’t Judge Yourself for Needing Help
The three-day Labor Day weekend often means relaxing and spending time with people you may not often see. This holiday, my fiancé Justin and ... Read more -
Seasons of Life with Friedreich’s Ataxia
Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that ... Read more -
Comprehensive MRI-based Study Reveals Brain Changes Linked to Friedreich’s Ataxia
A comprehensive evaluation of the brain with magnetic resonance imaging (MRI)-based methods and clinical features of Friedreich’s ataxia (FA) may provide valuable information to fully ... Read more -
FA Progression and Childhood Spies
In my memory, we were always lithe and sure-footed. Two shadowy cat burglars, but with no inclination to steal. So, not burglars; we were ... Read more
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Gene Therapy Approach in Early Tests Shows Potential to Raise Frataxin Protein Levels in Cells
A treatment approach that uses genetically engineered proteins was able to significantly increase the ... -
The Emotional Workout of Physical Therapy
In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical ... -
Reduced Sweat in Patients May Be Biomarker of Friedreich’s Ataxia, Study Suggests
Friedreich’s ataxia patients produce less sweat than healthy people, which may be a useful ... -
Case Report Describes Early FA Onset in Boy with Rare Gene Mutation
A new case report describes a 7-year-old boy with Friedreich’s ataxia (FA) who has ... -
Tips for Traveling with Friedreich’s Ataxia
When you plan a destination or a weekend getaway, it is wise to make ... -
My Big (Literal) Break
Editor’s note: This post includes images of a bone break that may be disturbing ...
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Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports
News
Many Friedreich’s ataxia patients experience urinary tract symptoms, bowel problems, and sexual dysfunction, which leads to a lower quality of life, research shows. The study, “Urinary, bowel and sexual symptoms in a cohort of patients with Friedreich’s ataxia,” was ... Read more