International Ataxia Awareness Day – September 25, 2022, history significance why we celebrate
International Ataxia Awareness Day is observed on September 25 every year. Ataxia is used to describe a group of disorders. While any part of the body can be affected, people with ataxia have difficulties with balance and walking, speaking, and swallowing. A rare disorder, it needs individuals to collectively talk about the impact this disease can have on one’s mental and physical well-being.
HISTORY OF INTERNATIONAL ATAXIA AWARENESS DAY
Ataxia is a rare disease that affects one in 50,000 people across the globe. Ataxia is a Latin term meaning ‘lack of order’ and is caused by cerebellum damage. While cerebral ataxias are hereditary, not all are genetic. Other causes of cerebellum ataxia are stroke, tumors, viral infections, or head injuries
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International Ataxia Awareness Day is observed by the National Ataxia Foundation every year. This organization was formed in 1957 in the U.S. The foundation is thoroughly dedicated to increasing awareness about this neurological disorder. Additionally, they also aim to increase the confidence of patients who are suffering from this disease.
Another motive behind this day is to ensure more physicians are also aware of ataxia, as, with adequate knowledge, they can help in detecting early signs and provide timely medical care that can help a potential victim. The medical fraternity is still working tirelessly to make advancements in finding a cure for this disease.
Ataxia is not to be taken lightly as it can be fatal in some cases. Moreover, the disease is progressive and gets worse with time. It is of paramount importance to lend physical and emotional support to patients with ataxia, which will help them manage the disease and keep their spirits high.
On International Ataxia Awareness Day, do your bit in whatever way you can, either by volunteering for awareness campaigns, donating funds, educating yourself, or simply getting your health checked to detect any possible signs of the disorder.
INTERNATIONAL ATAXIA AWARENESS DAY TIMELINE
1863
Friedreich’s Ataxia
German physician Nikolaus Friedreich first describes Friedreich’s ataxia.
1957
National Ataxia Foundation
The National Ataxia Foundation is formed to find a cause and cure for ataxia.
1975
First Meeting for Ataxia
The first joint meeting for ataxia research takes place in Minneapolis to promote research collaboration between clinical, genetic, and basic science research of ataxia.
1977
Symposium on Inherited Ataxias
The first International Symposium on Inherited Ataxias is held in Los Angeles with a representation of 100 researchers across five countries.
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HOW TO OBSERVE INTERNATIONAL ATAXIA AWARENESS DAY
Get a check-up
With advancements in the medical industry, there are presymptomatic genetic testings available to learn if you are likely to develop ataxia. Knowing is half the battle already won. You can then take precautions to ensure that triggers are kept at bay to avoid an ataxia episode.
Spread the message
Ataxia is rare and not a lot of people know about it. Educate yourself on this disorder and use the power of technology and social media to spread the word about it. With adequate knowledge, people can increase their focus on their health to lead a quality life.
Join an IAAD event
The National Ataxia Foundation organizes events to educate people about ataxia. You can join an IAAD event too and help the cause by lending your time and support.
5 IMPORTANT FACTS ABOUT ATAXIA
How it is inherited
The majority of ataxia is inherited and hence genes play a huge role in determining the way the condition will spread.
Presymptomatic genetic testing
Presymptomatic genetic testing is available for some forms of ataxia to determine if you’re likely to develop it or be a carrier.
Types of ataxia
There is more than one type of ataxia; ataxia-telangiectasia (AT), Friedreich’s ataxia, multiple system atrophy (MSA), and spinocerebellar ataxia.
Treatability
A few types of ataxia are treatable such as ataxia with a vitamin E deficiency, which can respond to vitamin E supplements as a form of treatment.
Prognosis
Severe cases of ataxia can be fatal in early childhood or early adulthood, while some may improve, and some cases may gradually become worse.
WHY INTERNATIONAL ATAXIA AWARENESS DAY IS IMPORTANT
It’s a rare disease
Ataxia is a rare disease that is caused by damage to the cerebellum, which is responsible for the coordination of movement. It can develop at any age and can get worse with time. It ends up affecting around 150,000 people in the U.S.
It’s not directly treatable
While there is no direct treatment for it, there can be some help sought to relieve symptoms that may trigger it. Some medications may cause symptoms of ataxia and, if stopped, the symptoms can be controlled. Timely medical intervention is of utmost importance here.
It can affect your daily life
Ataxia can adversely impact your daily life by prohibiting you from performing basic functions. We often take moving around, swallowing, and speaking for granted. Ataxia can affect these things that can leave us feeling helpless. International Ataxia Awareness Day can help build a community to allow victims of this disease to come together and know that they’re not alone in this.
