Frenchville Man Advocates for OPMD Awareness

FRENCHVILLE, Maine (WAGM) - Charles Collin used to build homes, play music, and dance with his wife. Today, a rare genetic disease, Ocular Pharyngeal Muscular Dystrophy or OPMD, has taken much of that away, and he’s speaking out to make sure others aren’t left in the dark.

According to the Muscular dystrophy Association, an estimated 1 in 100,000 people worldwide are affected by OPMD. But among those of French-Canadian descent, that rate jumps to nearly 1 in 1,000. Collin says his first symptoms were weakness in his hands, trouble with his eyes, and shortness of breath. Now, even with assistive devices, he still faces many challenges.

“My diet has changed considerable because I will choke on food. Sometime on a piece of rice. I’m a carpenter by trade. I can no longer do that because of the weaknesses and all of the muscles that have been affected in my body. I ended up going to school for teaching. I have a bachelor’s degree in education and master’s degree in education, and I can’t even do that. I used to play instruments. I can’t, I don’t have the strength in my hands to do so. I used to sing and I can no longer do that. I can’t do all of those things around the house anymore. We have to hire people out because I just can’t. I don’t have that capacity,” said Charles Collin, OPMD patient and advocate.

OPMD has also affected his social life. “I can’t be doing any activities that the families do. I’m usually sitting and watching. If we go to a restaurant everybody’s eating, and it takes me forever to eat. Dancing, I used to love to dance. I loved to dance with my wife. I can’t dance anymore. It’s a good thing I have grandchildren, a loving wife, and loving children.”

Collin says he wants to be an advocate for those with OPMD because of the lack of knowledge he’s seen in the healthcare system. “Many doctors know very little about the condition. I’ve seen probably at least 9 or 10 neurologists who examined me for the condition, and I even went to Boston with very little results. There’s no cure. It’s just a progressive disease. They can treat the symptoms, but they cannot cure anything.”

OPMD isn’t visible to the eye, and Collin says that’s led to some misconceptions. “They don’t see my condition. I don’t have a cast. I’m not in a wheelchair. I look completely functional. They don’t understand the disease, rightly so. They don’t see the pain so there is a misconception. “What’s wrong with him? How come he’s not working? Oh, he must be lazy. He just wants to be on the system.” All those things, I hear that all the time and that’s challenging.”

Collin encourages anyone experiencing symptoms to get tested for OPMD. He says he hopes to begin a support group and fundraising efforts for those with the disease. He says those in need of support can email him at charlescollin1964@gmail.com.