September 25 marks International Ataxia Awareness Day – where Ataxia UK and people across the world are spreading the word about ataxia: a group of rare, neurological conditions that are devastating and can be life-limiting. Ataxia affects balance, speech and co-ordination, and in some types of ataxia. can lead to heart failure. It’s rare and progressive, affecting approximately 10,000 adults and 500 children in the UK.
The figure is only an estimate, and because ataxia is not widely known by medical professionals, it is challenging to diagnose. Some people have been diagnosed unintentionally, while for others it has taken a whole decade. This September is about highlighting the challenges around diagnosis to work towards a better future for those with ataxia, and others who have not been diagnosed.
Sue Millman, CEO of Ataxia UK said: Many patients have a diagnosis journey running which continues into years, rather than months because of the rarity of the ataxias and clinicians’ lack of familiarity with them. Having a diagnosis means people can start to understand, and come to terms with, their condition and begin to plan for their future.
Ataxia is a degenerative disease of the nervous system. Many symptoms of Ataxia mimic those of being drunk, such as slurred speech, stumbling, falling, and incoordination. These symptoms are caused by damage to the cerebellum, the part of the brain that is responsible for coordinating movement, and some patients will require a wheelchair.
Ataxia treatment involves a combination of medication to treat symptoms and therapy to improve quality of life. There is currently no cure for the majority of ataxias, but there are forms of treatment that can ease the symptoms associated with ataxia.
Physiotherapy has been proven to help sufferers manage the condition, and neurophysiotherapists (who have specialist training in the treatment of neurological disorders) have particular expertise in this area.
Leading Welsh Neurophysiotherapist, Sara Davis, from Neuro Physio Wales, explains:
“While there is no cure for ataxia, research shows that targeted coordination and gait training over a four-week period resulted in improvements in people with cerebellar ataxia as measured by the Scale for the Assessment and Rating of Ataxia (SARA) that was sustained after one year – improving the outcome for patients. Physiotherapy can also help reduce falls and assist spasticity and assist in the control of upper limb tremor. At Neuro Physio Wales, we are able to work with clients in their own homes, in care homes or at our centre, where we have the latest technological equipment at our disposal. Getting a diagnosis in itself can be a relief for patients, but getting help swiftly following diagnosis can make a big difference to treatment outcomes.”
You can help spread awareness for thousands of people affected by ataxia. Follow Ataxia UK on Facebook /AtaxiaUK, Instagram @ataxia_uk and Twitter @AtaxiaUK; share the information and join the campaign.
Ataxia UK funds research to find treatments and cures. They offer support to families affected, and look to improve treatment and care for patients.