by Erin Thompson

Created on: May 03, 2008

Live every day like it's your last-this is what Tyler Smith, a senior at Edinboro University, says has served as a philosophy for his life.

"Sometimes I just want to stay in my room and never come out," said Smith, a 24-year-old print journalism major. "But if I don't come out, I realize that this could be my last day."
Smith is one of about 20,000 males in the U.S. who are affected by Duchenne Muscular Dystrophy (DMD), a disorder characterized by progressive muscle weakness.

DMD is the most common fatal genetic disorder in children around the world. The defective gene is passed through the mother. If a mother is a carrier, she has a 50 percent chance of passing the defective gene on to her child.

Those with DMD cannot produce dystrophin, a protein necessary for muscle strength and function, which leads to the deterioration of their skeletal muscles.

"Usually by the time [those with DMD] reach upper middle school and high school they start to use wheelchairs," said Robert McConnell, director of the Offices for Students with Disabilities.

The disease deals with the atrophy of muscles. The person's ability to walk is usually the first thing affected.

"As they get older it will begin to take over more of their body, so they have less ability to move," said McConnell.

Of the nine different types of muscular dystrophy, Duchenne is the most prevalent and the most severe.

Approximately one in 3,500 boys are born with DMD; it affects people of every ethnicity and geographic location, according to the Muscular Dystrophy Association.

A preschooler with DMD may seem clumsy and fall often. By school age, the child may walk on his toes or waddle and easily falls.

Most children with DMD lose the ability to walk between the ages of 7 and 12, and by teen years they may need assistance with activities that involve their arms, legs and torso.

"Generally people who have Duchenne do not live past their early 20s, in part because their heart starts to atrophy," said McConnell.

For people in the later stages of the disease, even coughing becomes a chore. "They can't build up enough air muscle in their lungs. If they catch a cold, it can be devastating," McConnell said. "Coughing is a labor and we have to be alert to that."

Although much is known about the cause and effects of DMD, the current treatment options are limited.Doctors recommend a number of steroids to prolong muscle functions.

Smith, who was diagnosed with DMD at age 12, was put on Prednisone after he started to notice his muscles

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