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Camp to fight muscle disease

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Jessica Tanner
Leader Staff Writer

Kristin Albright and her daughter, Alyssa, 7, of Tremonton both have muscular dystrophy of the hands and feet, Charcot-Marie-Tooth Disease (CMT). The disease is hereditary and gets worse over time. However, they have found ways to stay active and positive. For years Kristin attended an annual MDA Summer Camp and now her daughter is doing the same.
Kristin said there are about 40 different kinds of muscular dystrophy. CMT is a type of muscular dystrophy that weakens the muscles involved with their hands and feet, which makes it hard for them to do different tasks such as running, lifting their foot and writing.
Kristin found out she had CMT when she was about 12 years old. Her uncle, who worked in construction was holding his tools different than most people and was encouraged to get checked. The entire family decided it would be a good idea to be tested as well.
An electric shock test was conducted on their nerves to see if they were receiving the signals. It was determined that Kristin, her uncle, dad and grandpa all have a type of muscular dystrophy.
Since Kristin was only 12, she does not remember her reaction to this news. However, she remembers her mom saying, “Now it makes sense why you do this and that.” When asked about her attitude, Kristin said, “At first it made me feel like I was weak and it was a hindrance. Now I have decided to put this aside and act like I do not have it.”
At the age of 15, she heard about the MDA Summer Camp and she attended. She went for four years as a camper and has gone back every year since then to say ‘hi’ to longtime friends.
Kristin was about 75 percent sure her daughter, Alyssa, had the same disease because of a few suspicious signs. When Alyssa was five years old, Kristen took her to University of Utah, where doctors conducted strength exercises and other tests.
Her suspicions were confirmed and Kristin said, “I almost knew she did have it. It was just more of a confirmation when we found out. In a weird way I was kind of happy she gets to go to camp.”

(For the rest of this story, pick up a copy of the Leader or subscribe by calling 435-257-5182.)


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