Caregiver Stories - Teresa Buffone

Teresa has become a champion for myotonic dystrophy in Canada, but until about 10 years ago, she had never heard of the condition. After her young nephew passed away of an apparent heart attack in 2002. her husband's family was tested - and subsequently diagnosed - with myotonic dystrophy. Of the eight siblings in her husband's family, three were affected, including her husband. This was passed onto their children, as well - Teresa's son and daughter are affected, as are her niece and nephew.

Teresa cared for her husband until his death in 2012, and continues to provide support to her son. In addition to her role as a caregiver, she has made it her mission in life to educate doctors in Canada about the disease. Recently, she distributed the Myotonic's Anesthesia Guidelines to all Ottawa-area hospitals, and plans to have it sent to doctors and clinics around the country. She is helping a local hospital set up a myotonic dystrophy clinic, to provide further testing and information for DM patients, as well as necessary follow-up care. "I feel I am working toward institutional change," she says. "More information needs to be given to patients at diagnosis." Finally, Teresa is also involved with Myotonic's first Canadian support group, located in Ottawa.

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