This New North Texas Clinic Helps People With a Rare Muscle-Wasting Disease

Dr. Diana Castro opened the specialty clinic to give patients with Duchenne muscular dystrophy better quality of life

Lola Gomez, Dallas Morning News

Third-grader Connor Cagle was nervous about his echocardiogram. He wiggled in the reclining chair in the exam room at the Neurology & Neuromuscular Care Center in Denton while pediatric cardiologist Dr. Reenu Eapen put gel on a small probe.

The ultrasound of his heart wouldn’t hurt, Eapen promised. Connor, 8, wasn’t so sure. After his diagnosis of Duchenne muscular dystrophy, a muscle-wasting disease, in June of last year, doctors’ offices became places for needle pokes and anxiety.

Connor looked at his mom, Kathryn Cagle, with panic in his eyes.

“It’s just jelly,” Kathryn said.

“Oh, jelly,” Connor said. “Can I touch it?”

Eapen placed the probe in front of Connor so he could feel the cool gel on his finger. Both the pediatric cardiologist and Connor’s parents needed him to trust the procedure so they could see if he developed fibrosis, or scarring, around his heart.

The cardiology appointment is one of several Connor had on Thursday as part of the newly-opened CureDuchenne clinic. Funded by the nonprofit CureDuchenne and housed in Dr. Diana Castro’s neuromuscular practice, the clinic is one of the first in Texas to give patients a one-stop shop to see a cast of specialists, regardless of insurance status.

Duchenne is cruel and has no cure. Most of Castro’s patients will die in their late twenties or early thirties, and the fight to access a better quality of life through medications and specialized equipment is a difficult and expensive one.

“The problem is the lack of understanding. It’s almost like people don’t want to see it,” Castro said.

Castro knows the disease progression better than most. Boys – the genetic disease typically affects boys, although girls can be carriers and have minor symptoms – start showing signs of Duchenne in early childhood. Occasional leg weakness turns to difficulty walking, then difficulty moving at all. It affects every muscle, including the heart and muscles around the lungs, eventually making even coughing and breathing difficult.

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