A Letter to My Endlessly Loving Mother
Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your ... Read more
Updates
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#NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington
More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD ... Read more -
Walk a Mile in an FAer’s Shoes
Shoes are essential for making a statement on one’s wardrobe and personality. This is especially true for me as a young woman with ... Read more -
Iron Deregulation a Complex Consequence of Faulty Frataxin in Friedreich’s Ataxia, Review Study Says
Several studies have suggested that the deregulation of iron processing in the organism is an important feature of frataxin deregulation, and consequently of ... Read more -
I’m Not Yet Sure How to Fight My Fatigue
Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before ... Read more
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Daydreaming and Other Ways of Coping
“Don’t hold a glass over the flame/Don’t let your heart grow cold/I will call ... -
In Case of Emergency, Don’t Have a Disability
It wasn’t until a fire alarm at my hotel this past weekend that I ... -
Don’t Judge Yourself for Needing Help
The three-day Labor Day weekend often means relaxing and spending time with people you ... -
Seasons of Life with Friedreich’s Ataxia
Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every ... -
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 ... -
FA Progression and Childhood Spies
In my memory, we were always lithe and sure-footed. Two shadowy cat burglars, but ...
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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