Why is this so important?
Almost one of every 10,000 persons in the United States is affected by inherited ataxia, a genetic disease with multiple types, each of which could be considered a disease in its own right. They all have in common the loss of coordination. Symptoms and age of onset can vary depending on the type of inherited ataxia and can differ even among members of the same family.
Individuals with inherited ataxias have problems with parts of their nervous system that control movement and balance. The first onset of symptoms can include loss of balance and coordination of hand, arms, and legs movement, along with slurring of speech. Progression of the disease can make walking more difficult. Impaired coordination of body limbs makes daily tasks which require fine motor skills -- such as writing and eating -- a challenge, and can even be life-threatening from greater risk for choking or aspiration.
Abnormality of eye movements (including slow eye movements, involuntary eye movements or difficulty turning eyes when changing direction of gaze) is another progression of the disease, along with difficulty in speech and swallowing. Advanced stages will usually require the use of adapted devices such as a cane, walker, or a wheelchair.
To date there is no known cure for inherited ataxia. The degenerative nature of the disease is progressive and can occur over a number of years. How severe the disability will become and whether the disease will be fatal depends on the type of inherited ataxia, age of onset of symptoms and other factors which at this time are not well understood by the medical community.
Those in the Rochester community and surrounding areas -- all have heartfelt experiences and losses due to ataxia that make the work of the Rochester Ataxia Foundation so vitally important!
To seek medical advice from neurologists who specialize in ataxia – contact:
Hereditary Ataxia Program - University of Rochester Medical Center
Phone: (585) 341-7500
Website: URMC Hereditary Ataxia Program
For more information about ataxia go to: National Ataxia Foundation website