fbpx

New Local Clinic Treats Rare Disease

A boy in a wheelchair being checked by a doctor | Image by PNUMETAL/Shutterstock

The CureDuchenne clinic at the Neurology and Neuromuscular Care Center in Denton opened its doors this month to patients with a rare form of muscular dystrophy.

The ribbon-cutting ceremony was held at the clinic located at 2817 S. Mayhill Rd., Suite 115 on March 3, per the Killeen Daily Herald.

Funded by a $900,000 grant from the global nonprofit CureDuchenne and a $500,000 bank loan, the clinic can treat patients with Duchenne muscular dystrophy regardless of their insurance status over the next three years.

In the meantime, its founder, Dr. Diana Castro, hopes that she will manage to raise funds to keep the clinic running in the future.

“We need people to get interested, to donate. Anybody that can give us a hand to try and help these people long-term,” Castro told The Dallas Morning News.

Steady financial support is critical given the nature of the disease suffered by patients of the CureDuchenne clinic.

Duchenne muscular dystrophy is a progressive muscle-wasting disease that has no cure. Among approximately 250,000 people in the United States living with some form of muscular dystrophy, less than 50,000 suffer from this particular disease.

Duchenne muscular dystrophy almost exclusively affects males due to how the genetic mutation occurs. Essentially, this mutation tells the body not to produce dystrophin, a critical protein that helps muscles recover from mechanical stress. Over time, the simplest movements related to daily life wear on the muscles of the body, which deteriorate, cease to function, and eventually die.

Every muscle of the body is affected, including the heart and those surrounding the lungs.

Diagnosis of Duchenne muscular dystrophy usually occurs between the ages of 2 and 11. Lifelong care is needed, with patients living until their late 20s on average.

The CEO and founder of CureDuchenne, Debra Miller, knows firsthand how difficult it is to find medical professionals specializing in this rare disease, not to mention the barriers of cost. Miller’s 26-year-old son has Duchenne muscular dystrophy.

“There are close to 1,000 Duchenne families in Texas, and it’s not just the Dallas area that’s going to benefit but Houston and Austin and all over the state. This is the first time that they’re going to have a dedicated clinic that they can go to — regardless of language, regardless of income, regardless of insurance — and get good care,” Miller told the Killeen Daily Herald.

Connor Cagle, a third-grader from Weatherford, is receiving treatment at the new clinic. His mother Kathryn Cagle makes the hour-long drive in the hope that her son will have a better quality of life with medications and specialized equipment.

The CureDuchenne clinic provides a one-stop-shop for patients to see a variety of specialists. Specialists include cardiologists who conduct echocardiograms to check for fibrosis or scarring around the heart, pulmonologists who monitor lung function, and physical therapists who work on maintaining mobility.

According to Castro, the clinic also provides a sense of community for patients and their families by providing a supportive environment where they can get the care they need.

This is just one way that Castro, who almost quit medicine after burning out in April 2021, endeavors to make the clinic patient-centered — not profit-driven.

“I didn’t go into medicine to have a McDonald’s as a clinic,” Castro told the DMN. “I want to have a patient relationship and it’s not allowing you to anymore.”

Castro hopes that her project with CureDuchenne will inspire other medical professionals to make similar changes.

“There are a lot of physicians leaving the industry because of that, but there are many who want to continue seeing patients, just on different terms. I think this will hopefully be a model for others,” Castro told the Killeen Daily Herald.

Support our non-profit journalism

Submit a Comment

Your email address will not be published. Required fields are marked *