Monday, May 20, 2024

Friedreich’s Ataxia

Friedreich’s ataxia is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from gait disturbance and speech problems to heart disease. Friedreich’s ataxia is named after the physician Nicholaus Friedreich, who first described the condition in the 1860s. “Ataxia,” which refers to coordination problems such as clumsy or awkward movements and unsteadiness, occurs in many different diseases and conditions. The ataxia of Friedreich’s ataxia results from the degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath — the insular covering on all nerve cells that helps conduct nerve impulses.

Friedreich’s ataxia, although rare, is the most prevalent inherited ataxia, affecting about 1 in every 50,000 people in the United States. Males and females are affected equally.  Find dedicated Friedreich’s ataxia sites listed below in the area of ABLEize offering symptom and diagnosis details plus treatment and causes as well as related information.

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A busy and informative site based in Dublin, Ireland offering Ataxia tips, information and resources as well as support and exercise videos.

Highlights the causes, forms of Ataxia with transmissions and symptom details. Includes useful publications, research details and information about Ataxia related events taking place in Canada and other locations. Information offered in English and French.

Friedreich’s Ataxia Research Association based in Australia highlights recent research and offers information for sufferers with details of how to get involved. Includes details of Ataxia events and membership.

Friedreich’s Ataxia News was set up purely to offer news, information and updates including research, causes and therapy. Site includes details of experimental ataxia treatments taking place.

Offers a large online collection of ataxia information and resources as well as general and medical information about Friedreich’s Ataxia plus images and chat. Created in 2001 by Michel Beaudet and dedicated to his memory.

One man’s account of living with ataxia sharing his views on his life, exercise, spiritual beliefs and how to make travelling with Friedreich’s Ataxia easier. Included dedicated blog entries.

A personal story of friedreich’s ataxia as told by Krystie Maddox from Wolverhampton. Offers a valuable insight.

Information from the Multiple Sclerosis Trust highlighting the shared symptoms of MS and ataxia. Includes an explanation of the condition, details of numbers affected and tips on coping with the condition.

The personal blog of a 31 year old’s life with ataxia sharing her views in the hope that they will enlighten able bodied people as to what this genetic disorder is and the effects it has on her life.

Professions information and resources offered the the UK’s NHS. Explains the types of ataxia, what causes it and suggested treatments along with details of sufferers outlook.

Articled written for doctors with friedreich’s Ataxia information compiled in a technical language but considered a good guide for the public.

Set up to help improve the lives of people affected by ataxia. Offers support, ongoing research and education. Sigh up for regular newsletters and event details. Based in the U.S.