Ataxia Support Group Finds Six Members On Second Day
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27 September 2010
By Umesh Isalkar
Little did Guruprasad and Vivek Rao, brothers and patients of ataxia, expect that just a day after opening the city’s first support group for ataxia patients on the occasion of the International Ataxia Awareness Day, they will have six more members, all suffering from the neurological disorder, come together. It was a pleasant surprise, and it underlined the need for such a support group.
Ataxia, which in Greek means lack of order, is a neurological sign and symptom that consists of gross lack of coordination of muscle movements. Ataxia is a non–specific clinical manifestation implying dysfunction of the parts of the nervous system that coordinate movement, such as the cerebellum. Several possible causes exist for these patterns of neurological dysfunction.
"These six people, including two minors, from various parts of the city, including Sutarwadi, Dapodi, Pimpri, Rajgurunagar and Kalyaninagar, came to us just a day after we inaugurated the group.
It is a good sign that patients are coming forward from the confines of their homes," said Vivek Rao of the newly–founded Ataxia Awareness Group (AAG), Pune, which will be registered as a branch of India’s first ataxia support group Samag (Seek A Miracle – Ataxia Group), based in Hyderabad.
Commenting on its incidence and rarity as a neurodisorder, neurologist Rajas Deshpande, a specialist in movement disorders, said, "Anything that causes difficulty in walking and coordination of hands or legs movements is called ataxia. Ataxia can be caused by several diseases.
Some of them are caused by genetic defects. Friedreich’s ataxia is quite rare and its incidence is very low in society. It is not very commonly diagnosed. A recent test called Frataxin is now available to diagnose Friedreich’s ataxia.
But the problem is that this is not the only ataxia, symptoms of ataxia may be caused by various other disorders like vitamin B12 deficiency, peripheral neuropathy, spinal chord disease and cerebellar (lower part of brain) diseases. It may also be caused by stroke and paralysis."
Deshpande added: "These conditions are very prevalent in society. It is essential to know that ataxia,caused by genetic defects, is also associated with difficulty in speech and tremors in eye movements called nystagmus.Some of these patients may have mild mental retardation. Ataxia caused due to deficiency of vitamin B12 and vitamin E is completely treatable and reversible. This means that not all forms of ataxia are incurable."
Ataxia caused by spinal chord compression may also improve after decompressive surgery. Ataxia of peripheral neuropathy is commonly caused by diabetes and is preventable with good control of blood sugar levels. Drugs used in the treatment of epilepsy commonly caused ataxia which can be reversed after stopping the drug. Alcohol is another major cause of cerebellar degeneration causing ataxia, he added.
"Considering this, ataxia in general is not a very rare disease. Only a certain form like Friedreich’s ataxia is rare," said Deshpande.
Thirty–one year old Vivek Rao and his elder brother Guruprasad (36) have spent most of the last 10 years in the confines of their homes after they were diagnosed with Friedreich’s ataxia. They found a flicker of hope when they were introduced to India’s only ataxia support group ‘Seek A Miracle Ataxia Group’ (Samag) based in Hyderabad.
In September 2009, the brothers, their mother and father K H Rao participated in the National Ataxia Day programme at Hyderabad conducted by Samag.
Since then the Rao brothers have been working towards starting a similar support group in Pune. "We wanted to start a Pune chapter of Samag to bring ataxia patients from the city and adjoining areas together so that we can support each other," said Guruprasad.
"Of the six people who have joined the group, two have been diagnosed with Friedreich’s ataxia," Vivek added.
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 the fingers, hands, arms, legs, body, speech, and eye movements
How Is It Diagnosed?
Diagnosis is based on a person’s medical history, family history, and a complete neurological evaluation including an MRI scan of the brain
The Common Symptoms
Symptoms and time of onset very according to the type of ataxia. In fact, there are often variations within the same family with the same type of ataxia. Recessive disorders commonly cause symptoms to begin in childhood rather than in 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.
(Source: National Ataxia Foundation.)