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My Friedreichs Ataxia Journey

When I think of the word ‘inspirational’ I associate it with doctors/nurses whom give up their lives and move to work & help in war torn countries, someone who has dedicated their lives to medical research – someone who is really trying to make the world a better place.

When I think of the word ‘brave’ I associate it with a lifeguard saving someone from drowning, a firefighter saving someone from a burning house, a garda confronting an armed criminal – someone who is willing to give their life to help others.

When I think of the word ‘strong’ I associate it with someone with a terminal illness but refusing to let it consume the life they have left, someone grieving a loved…

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Articles of Interest

Friedreichs Ataxia Phrases

I’m not ‘inspirational’ or ‘strong’ or ‘brave’ or ‘courageous’, I’m just me and I have Friedreichs Ataxia. I want to live my life and because I have FA it will always be more difficult, but that does not mean any of the above phrases apply to me because they shouldn’t – I’m not doing anything or being anyone extraordinary, I’m just trying to live my life.

Living With A Disability: How To Face Everyday Challenges

Disability presents many daily challenges. On the surface, some of these challenges may seem insignificant, so we avoid the situation and try to tell ourselves to focus on more important things.

Survival of the Fittest: Fighting Friedreich's Ataxia

A short documentary on a family's fight with the progressive neuromuscular condition Friedreich's Ataxia.

Resources

6 Tips for Coping With a Debilitating Disease

I was diagnosed with a rare, debilitating disease called Friedreich’s ataxia (FA) when I was 17. I am now 33. Here are some things to consider when thinking about what rare disease means for your life.

Friedreich Ataxia Scientific News

Friedreich Ataxia and close related scientific news. Topics related to rare diseases.

Friedreich’s Ataxia Research Alliance

FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.

My friedreichs ataxia journey

I have Friedreichs Ataxia and hopefully this blog will help enlighten able bodied people as to what this genetic disorder is and how it effects my everyday life...

rideATAXIA

rideATAXIA is a nation-wide program of bike rides that welcomes people of all abilities to ride, and to raise funds for FARA's mission to treat and cure FA through research.

Team Kendall

Our mission is to raise awareness about Friedreich’s Ataxia (FA) and educate others on FA so we can all be a part of the journey to find a cure.

The FA Project

• The FA Project is committed towards creating awareness of Friedreich's Ataxia, a life altering disease. We aim to educate the public by increasing the visibility of related information & resources and creating a support system for those afflicted with FA. Ultimately it is our goal to provide those living with FA the tools and resources necessary to lead the best life possible.

Extreme living

How I live with ataxia.

Genetics Home Reference

Most people with Friedreich ataxia begin to experience the signs and symptoms of the disorder between ages 5 and 15. Poor coordination and balance are often the first noticeable features. Affected individuals typically require the use of a wheelchair about 10 years after signs and symptoms appear.

National Institute of Neurological Disorders and Stroke

Friedreich's ataxia (also called FA or FRDA) is a rare inherited disease that causes nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time. The disorder is named after Nicholaus Friedreich, a German doctor who first described the condition in the 1860s.

Patient

Friedreich's ataxia is the most common inherited ataxia in the UK. It is a degenerative disease that primarily affects the nervous system and the heart. It is frequently associated with cardiomyopathy or diabetes. There is progressive ataxia, dysarthria, decreased proprioception/vibration sense and muscle weakness. The inheritance is autosomal recessive.