American Ataxia Networking

Vitamin Switches on a Gene A Potential New Treatment for Friedreich's Ataxia?

Friedreich’s ataxia is a debilitating disease with no cure. A neurodegenerative condition that frequently takes hold in childhood, the inherited condition robs people of their co-ordination and motor functions over time. Speech becomes slurred, mobility impaired to the point of severe disability frequently by the age of 30, and sufferers are at a high risk of diabetes and cardiomyopathy. But novel research…

After finding out (for certain) that I had Progressive Cerebellar Ataxia in March of this year, I experienced many emotions, and feelings that I didn't know how to handle.  When I saw my primary care doctor he suggested I talk to a professional about them.  I wasn't sure how I felt about this, and I reluctantly agreed. Today was my first appointment. As I sat in the waiting room waiting to see (Kirk), I was very nervous.  My mind was racing wondering what I was even going to say to him.  I…

Finding a new doctor can be difficult, and very scary.  Being prepared can make the whole experience much easier on you, and on the new doctor.  Remember that the doctor works for YOU, and if you are uncomfortable, then you are free to keep searching for someone else.  The best doctors are ones that spend time with you, listen to your concerns and take them seriously, and be willing to work with you to find the treatment that is best for you.  If you find…

One thing I have learned through this site, and through my own experiences is that stress affects this disease. The thing that really surprised me is how much common illness seems to affect me. I'm talking about a cold, allergies, or even a headache.  This past November I caught a cold, it went into a sinus infection, and I ended up out of work from November 24th until March 11th.  The cold started my head spinning, and I felt as if I were walking around in a cloud.  It made all my usual…