Patient Stories: Jamie Lee and Sam Dwyer

In this video from Georgia Maher, we meet Jamie Lee Dwyer and her sister Sam who both suffer from the rare degenerative neuromuscular disease, Friedreich’s ataxia. It’s estimated the girls are two of between 300 and 500 people living with the disease in Australia.

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Neurologist Dr. John O’Sullivan from the Royal Brisbane Hospital explains that the cerebellum, spinal cord, and the nerves that come out of the spinal cord are all affected by the disease. This leads to loss of coordination and balance, weakness and impaired sensitivity, and eventually loss of mobility. Speech and swallowing may also be affected.

Mike Dwyer, Jamie Lee and Sam’s father, has dedicated his time to find out more information about the condition and has also set up the Friedreich’s Ataxia Research Association (FARA) which raises money for vital research into the genetic disease.

MORE: Five major symptoms of Friedreich’s ataxia

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.