Patient Story (ICYMI): Duchenne Muscular Dystrophy Patient Competes in Race

According to a recent article, 17-year-old Diego Ramirez was able to compete in the Flying Pig Marathon despite his Duchenne muscular dystrophy diagnosis.

Duchenne Muscular Dystrophy (DMD)

Duchenne muscular dystrophy (DMD) is one of nine forms of muscular dystrophy.  Patients with DMD cannot make dystrophin in their muscles, causing muscle weakness, eventually resulting in heart and respiratory weaknesses and quadriplegia.

Worldwide, DMD occurs in one per 3,500 male births and only one in approximately 50 million female births.

Symptoms:

DMD symptoms usually manifest before the age of six. DMD symptoms include:

  • Muscle weakness beginning in the legs, pelvis and thighs, progressing to the rest of the body
  • Motor skills difficulty
  • Frequent falling
  • Difficulty moving positions
  • Difficulty walking
  • Fatigue
  • Learning disabilities and low IQ
  • Progression to heart disease and respiratory failure

Cause:

DMD has an inherited, X-linked recessive pattern. DMD is passed on by mothers, who are carriers of the genetic mutation that causes DMD.

Treatment:

DMD treatments aim to manage symptoms as there is no cure for DMD. They include:

  • Steroids
  • Asthma treatment (e.g.albuterol)
  • Amino acids
  • Carnitine, CoQ10, Creatine and other supplements
  • Activity
  • Assisted breathing
  • Heart medicine

Diego Ramirez’s Journey to the Race

At only 17-years-old, Diego Ramirez has lost the ability to walk due to his Duchenne muscular dystrophy diagnosis. He uses a motorized wheelchair in order to get around for his daily tasks. Despite his diagnosis, Ramirez is still focused on school, is a part of an active friend group, and is even in his high school’s musical. In spite of what his disease has taken away from him, he still finds ways to maintain a fairly normal life and accomplish his goals.

The Flying Pig Marathon takes place in Cincinnati, Ohio and is an annual race that spans around 26 miles. It celebrated its 11th year this year on the first Sunday in May.

This year, Diego Ramirez finished 11th in the marathon. A group of adults joggers, made up of Ramirez’s father, uncle, and uncle’s friend, made this dream possible for him as they pushed him through the race. Affectionately named “Team Diego”, as the team crossed the finish line it was an emotional moment for everyone.

Diego Ramirez has been vocal about his appreciation for all of the support people have given him. The support of his friends and family have allowed him to still pursue his dreams, including his dream of becoming a graphic designer after he graduates high school next year. Diego Ramirez is an inspiration for people living with rare diseases, showing that a rare diagnosis does not mean you can’t still follow your dreams.

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