Created: 07/01/2014 9:20 PM
By: Tessa Mentus, KOB Eyewitness News 4
It could sound like the screenplay for the next Hollywood blockbuster.
“A deadly disease, without a cure, that tends to target people living in one particular part of the country.”
However, it’s not part of a script; it’s reality for thousands of people in New Mexico.
Glen Chavez is extremely proud of his family’s history in New Mexico, but he believes that history could also be a curse; one he realized during a regular work day.
“I spent 25 years working as a nurse and had a hard time moving my patients in bed,” Chavez said. “It was like, what’s going on here?”
“I was told to go see a neurologist, and they said ‘you have this thing called OPMD,’ holy crap,” Chavez said.
OPMD stands for Oculopharyngeal Muscular Dystrophy. What’s even scarier than the name are the facts behind it.
“It's a rare muscular dystrophy, but it happens to be quite common in New Mexico, particularly among Hispanic Americans,” Dr. Sarah Youssof said. Dr. Youssof is a neuromuscular specialist with the University of New Mexico’s Department of Neurology.
In fact, researchers believe 6 in every 100,000 New Mexicans have OPMD. That’s compared to 5 out of 100,000 Americans who have the most popular form of a muscular dystrophy disease; but why the extremely high rate of New Mexicans with OPMD?
“The reason we think this has happened is that hundreds of years ago, Spanish colonists may have settled here, and one of them carried the disease and then passed it down through the generations,” Dr. Youssof said.
That theory plays out with Chavez’s family. He got it from his mother, who got it from her father. Chavez’s grandfather is one of twelve children. Seven of them had OPMD. Dr. Youssof said half of the children born to people with OPMD will get the disease.
Sadly, OPMD is taking more of Chavez.
“I spent so many years helping people and their families get comfortable with terrible diseases taking their loved ones,” Glen said. “It’s allowed me to somewhat get adjusted to the fact that this is my existence now.”
OPMD targets specific muscles. Dr. Youssof said it tends to start with people’s eyelids and the muscles that allow them to swallow. Later it can travel to people’s arms and legs. Chavez has had silicone bands placed in his eyelids to help keep them open. He and his mother have had their throats expanded to help them swallow. Chavez has a motorized wheelchair to help him get around, but now he’s looking for a carrier that will allow him to get his wheelchair around different parts of town easier.
UNM’s Department of Neurology is heading a local study, which includes Glen, involving New Mexicans with OPMD. Researchers have started a national registry of people who suffer from the disease, and they’re trying to increase funding for potential therapies and treatments. Part of the local study is to understand the different severities of OPMD. By understanding those levels now, they can catapult the next generation of research regarding treatments and therapies that target different elements of the disease.