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6 August 2012
Ataxia UK is the national charity for those in the UK who are affected by ataxia. Ataxia is a set of progressive neurological conditions that affect balance, co-ordination and mobility. There are many different types of ataxia and they affect people in different ways. Very commonly, ataxia will cause people to fall over or struggle to walk, and generally to be clumsy and at risk of being hurt in falls and accidents. This is due to loss of balance and poor co-ordination. As the condition progresses walking may become difficult, or even impossible, and those affected may need to use a wheelchair.
Other common symptoms experienced by people with ataxia include:
• Slurred speech
• Problems with swallowing
• Tremors or shaking, often of the hands
• Extreme fatigue
• Problems with blurred or double vision due to difficulty in
controlling eye movements
• Painful muscle spasms
• Low mood, anxiety and depression
There is currently no cure for ataxia.
Daniel Roque–Hall has a diagnosis of Friedreich’s ataxia (FA) and requires assistance from carers to carry out everyday living tasks.
Friedreich’s ataxia is a progressive disorder mainly affecting the nervous system. The main problems experienced by people with FA are due to an inherited gene that causes certain nerve cells in the body to become damaged and eventually die. The affected nerve cells are mainly those of the spinal cord and those that connect the spinal cord to other parts of the body, such as the arms and legs. Other cells of the body are also affected, including within the heart and pancreas, accounting for other conditions associated with FA, for example cardiomyopathy. FA has a massive impact on every aspect of someone’s life; in addition to quite profound physical disability, the emotional impact is huge and people with FA often become depressed. The progress of FA differs from patient to patient but the average age of death is 35 – 40 years old.
The symptoms and outcomes of FA are profoundly disabling and require round-the-clock support to sustain safety and quality of life. It is essential that specialist services, appropriate to the individual’s care needs, are both fully available and in place. They are needed to work against progressive loss of strength, to preserve mobility, maintain safety and wellbeing, and to reduce and contain the risks to an already limited life from hazards such as choking during swallowing or coughing. They help reduce the potential loss of speech and the risk of serious or fatal injury from falling. Without these services in place, health and wellbeing – both physical and emotional – will be considerably compromised as time passes.
Daniel’s balance, co-ordination and mobility is already significantly compromised by his FA, and it is vital to his future welfare that he is provided with necessary care. He was given a 3½ year custodial term – not a death sentence. Ataxia UK supports his family’s aim to achieve this without further compromise to his health and wellbeing.