Rare or not: Does anyone have an idea how many... - Ataxia UK

Ataxia UK

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Rare or not

Pec2884 profile image
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Does anyone have an idea how many people suffer from cerebellar ataxia in the UK. Is it a rare condition or not. I am waiting for a second opinion

The first is cerebellar ataxia. does this now get down to a specific type? I live in South Africa.

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Pec2884 profile image
Pec2884
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Pashka013 profile image
Pashka013

Where in South Africa do you live and what are your symptoms that you want a second opinion. I know that South Africa does not understand Cerebeller Ataxia as much as the UK.I believe that there are about 10000 sufferers in the UK which to me is quite rare considering that there are 60 million people here. The people on this site are really fantastic and will welcome you into the family of 'Ataxians' plus give you advice and support .

wobblybee profile image
wobblybee

Hi😊

Ataxia often occurs when parts of the nervous system that control movement are damaged.

Cerebellar and Spinocerebellar degeneration have many different causes, ataxia can be acquired after trauma.

People with ataxia experience a failure of muscle control in their arms and legs, resulting in a lack of balance and coordination or a disturbance of gait.

While the term ataxia is primarily used to describe this set of symptoms, it is sometimes also used to refer to a family of disorders (SCAs). It is not, however, a specific diagnosis.

hppt://ninds.nih.gov/disorders/ata...

Sometimes it just isn't possible to allocate a SCA number, a person can be diagnosed as Idiopathic ( unknown cause).

😊xB

february profile image
february

Dear Pec2884, I live in the US and it's a rare condition here also. I have Sporadic Cerebellar Ataxia (progressive, unknown cause, symptoms 24/7), diagnosed eleven years ago. There are some known types of ataxia that are dominantly or recessively hereditary, althought I've had dominent and recessive genetic testing for known ataxia's, which was negative. Eventually, I'm hoping to have genetic "genome" testing, which is more specialized. No one in my family, as far back as we know has/had ataxia, except me. Some people aquire ataxia due to a stroke, traumatic brain injury or other causes, especially if the injury is related to the cerebellum. People with MS or Parkinsons have ataxic symptoms (gait/balance issues, etc.)...,;o)

HarryB profile image
HarryBAdministrator

Hi pec2884

There are over 80 genes identified (and counting) that cause ataxia and there are still 40-50% of people diagnosed with cerebellar ataxia who don't know what the underlying cause is. When combining all the different causes together, there are about 10 000 people in the UK with ataxia.

Harriet

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