Life with Coco and Gigi... and Jack-Jack too!

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International Ataxia Awareness Day

Today is International Ataxia Awareness Day. Most of you have probably never heard of ataxia, unless you have here of course. :D I know I never had before I had Abby. Here is some information on it:

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 the fingers, hands, arms, legs, body, speech, and eye movements. 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.

Symptoms and time of onset very according to the type of ataxia. In fact there are often variations even within the same family with the same type of ataxia. Recessive disorders commonly cause symptoms to begin in childhood rather than adulthood. However, in recent years since genetic testing became available, it is now known the Friedreich's ataxia has an adult onset on some occasions. Dominant ataxia often begins in the 20s or 30s or even later in life. Sometimes individuals may not show symptoms until they are in their 60s.

Typically balance and coordination are affected first. In 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.


Info from: http://www.ataxia.org/index.aspx

1 comments:

Christina 7:45 PM  

My sweet Abby has this too. :) Thanks for sharing! And like you, I never knew what it was either!

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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