Posted by: Patricia Hysong | September 22, 2014

International Ataxia Awareness Day

 IAAD

September 25

“International Ataxia Awareness Day” is an international effort from ataxia organizations around the world to dedicate September 25 as International Ataxia Awareness Day. Although each participating country, state, or individual may have a specific plan for this event, the main focus is to raise awareness about Ataxia and to help fund research to stamp out this disorder.

Creating Ataxia Awareness

The goal of IAAD is for every individual to participate in some activity, creating awareness about ataxia. You could share something you know about ataxia with one other person who has never heard of it, educate a group of people by speaking at a school or civic group, contact the media, raise financial support or write about it on a blog and sharing awareness with you. That is what I am chosing to do. My daughter suffers from a form of ataxia called Ataxia with Oculormotor Apraxia Type II (AOA2).

What is Ataxia?

The word “ataxia”, comes from the Greek word, ” a taxis” meaning “without order or incoordination”. The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect

  • fingers
  • hands
  • arms
  • legs
  • body
  • speech
  • eye movements
  • all of the above.

The word ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias which are the National Ataxia Foundation’s primary emphases.

What are Common Symptoms?

Typically balance and coordination are affected first. Coordination of hands, arms, and legs, and slurring of speech are other common symptoms. Walking becomes difficult and is characterized by walking with feet placed further apart to compensate for poor balance. Impaired coordination of the arms and hands affect a person’s ability to perform tasks requiring fine motor control such as writing and eating. Slow eye movements can be seen in some form of ataxia. As time goes on, ataxia can affect speech and swallowing.

The hereditary ataxias are degenerative disorders that progress over a number of years. How severe the disability will become and whether the disease will lead to death depends on type of ataxia, the age of onset of symptoms and other factors that are poorly understood at this time. Respiratory complications can be fatal in a person who is bed bound or who has severe swallowing problems. Some persons with Friedreich’s ataxia develop serious cardiac problems.

ataxia

International Ataxia Awareness Day has grown over the years and now includes events that are spread out through the month of September. The increased awareness and support is a step in the right direction to hopefully making Ataxia a thing of the past. It may not happen in my lifetime but we can hope that in my daughter’s or grandson’s, there will be a cure found! You can view the Ataxia Presentation to find out more.

Information obtained and adapted from the following source: National Ataxia Foundation

This information is provided courtesy of the Wyoming AgrAbility Project. For more information, visit our website or call toll-free at 866-395-4986.

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