Preface: This article is included here not to introduce another debilitating disease but to highlight the need for a positive attitude while living with progressive physical disability. Negative thoughts can plunge you into a dark depression that will leave you unable to cope with your situation and unable to make the best of it. It is not what you have lost that counts most. It is what skills and capabilities are still under your command that count most in going forward with your life.
Two Manitoba sisters are living life to the fullest despite having Friedreich's ataxia, a rare genetic disease that is sometimes called the "drunk disease."
Chelsey and Brittany Sommerfield were diagnosed with Friedreich's ataxia five years ago, when they were 16 and 13 years old, respectively.
A fundraiser will be held on July 20 at the Norberry-Glenlee Community Centre in Winnipeg to help the Sommerfield family with costs related to Friedreich's ataxia.
The costs include those related to modifying their home so Chelsey and Brittany can move around more easily, as well as travel costs to the U.S. so they can take part in medical studies.
The degenerative disease damages their nervous systems over time, impairing their movement, coordination, vision and speech. It could also shorten their life expectancy.
"Basically they call it the drunk disease, because people think we're drunk," Chelsey told CBC News in an interview.
"Our speech slurs and we're kind of like wobbly. Sometimes we walk, just grabbing someone's arm, and it just looks like someone is helping some drunk girl."
It's estimated that about one in every 50,000 people have Friedreich's ataxia. The Sommerfield sisters say they know of only one other person in Manitoba who has it.
There is currently no cure or effective treatment for the disease, but the sisters say they are taking part in medical studies in the United States.
Brittany and Chelsey are also having fun. They recently tried out skydiving, after hearing that it made others feel temporarily free of the disease's effects.
Source:
'Drunk disease' doesn't stop Manitoba sisters - Manitoba - CBC News
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