Fatigue Is One of the Most Difficult Symptoms I Deal With
Friedreich’s ataxia (FA) patients face multiple symptoms that can help confirm a diagnosis. The five most common symptoms are difficulty walking, sensory changes (such ... Read more
Updates
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‘The Lion King’ and the Circle of Life with FA
My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family ... Read more -
If You Want to Get Better at Something, You Need to Put in the Practice
In my previous column, I focused on the thought processes that prevent us from doing our best. This subject has been on my mind ... Read more -
It’s Time to Revisit Self-accountability to Better Focus
I have been going back and forth about this column. But I think it’s important to show my readers and myself that I am ... Read more -
I Found My Happy Place with a Surf Chair by the Ocean
There is nothing better than the feeling of the ocean air in my hair while I bask in the hot summer sun on a ... Read more
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Lab-cultured Heart Tissues Derived from Stem Cells Deemed Suitable to Study FA
Lab-cultured heart tissues derived from patients’ stem cells are a suitable model to study ... -
The Zeego Tales: Naming the Hurricane
“The Zeego Tales” track the wonders of my new life with my service dog, ... -
Excuses Are Built on the Foundation of ‘Good Enough’
I’m learning to be cautious of the commitments I make, big or small. I ... -
A Plan for Parenthood: 4 Things We Considered
It is hard to believe that July has come and gone, and that the ... -
Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, ... -
Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ...
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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