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Your Healthy Family: Muscular dystrophy explained by pediatric rehab doctor

Posted at 2:17 PM, May 28, 2019
and last updated 2019-07-30 12:16:54-04

COLORADO SPRINGS – The Colorado Springs 2019 MDA Muscle Walk is happening this Saturday June 1st, 2019.

Dr. Wendy Pierce with Children’s Hospital Colorado, MD, specializing in pediatric rehabilitation medicine works with muscular dystrophy patients.  She explains, “It’s a genetic disorder that affects various levels of the muscles. Muscles are pretty complicated, and contains a lot of proteins. Muscle Dystrophy is a set of disorders that can affect any specific protein within the muscle, and that’s why there is such a broad range of muscular dystrophy and how it presents in individuals.”

In most cases, but not always muscular dystrophy strikes in young kids, says Dr. Pierce.  “Most of the time families present (with children) ranging in age from 3 to 4. Their child who was able to run before, is now not able to run.  They are tripping and falling more often than they used to. Or it could be something more out of the ordinary, like they used to be able to climb stairs but now they’re really having a hard time being able to do that.  Those are the red flags.”

Muscular dystrophy comes in many forms and can have a wide range of effects on a persons quality of life.  Dr. Pierce says, “Best case scenario would be a very slowly progressing type of muscular dystrophy, where the lifespan is very typical – up to the seventies or eighties.  Muscular dystrophy can be debilitating to the point where we are kids aren’t able to get themselves in and out of bed, and they rely on a wheelchair to get around from point A to point B.  Family then needs to help them with everything. They need to have help with dressing, getting on and off the toilet, with bathing. They need help being turned over when they’re uncomfortable in their beds, and it affects pulmonary function.  In the faster progressing types of muscular dystrophies, people can die anywhere from in their teens to their twenties.”

There remains no cure for any form of muscular dystrophy but new treatment can make a big difference in some cases.  Dr. Pierce says, “There are a lot of clinical trials out there and because we know that this is a genetic disorder, and there are hundreds of genes that are affected.  People are looking at drugs that can modify these genes. There are some forms of muscular dystrophy where there is a drug that can alter a gene that is FDA approved. Most things are in clinical trials right now, so for people who have the genes that would qualify for a clinical trial, or for a specific targeted drug, it can basically delay the progression of the disease and help maintain their health while they’re on the drug.

Dr. Pierce also says she feels the day is coming when more progress is made in the fight against muscular dystrophy.  “They are already there with some of the diseases, so it’s pretty exciting times we are in.”

Supporting research is just one reason to come to the MDA muscle walk this Saturday at John Venezia Community Park in Colorado Springs.  Dr. Pierce says, “If you support this walk, you support all aspects of the disease. You’re not only supporting research behind trying to find a cure for the multitude of different causes, but your also providing funding for MDA to support families dealing with muscular dystrophy.  You’re providing support for summer camps for kids with muscular dystrophy. MDA also does a lot of education for the community, and can support a newly diagnosed child who may have to explain it to their friends. The MDA is there to help connect families with each other in so many different ways who are going through this struggle.”

In our next Your Healthy Family story, we’ll meet Brian Moreno, a 37-year-old husband and father who is fighting every day to stay on his feet, and be engaged with his life as he deals with muscular dystrophy.

You can support and learn more about the 2019 Colorado Springs Muscle Walk happening this Saturday, on the event’s web page (CLICK HERE).

Hope to see you at John Venezia park this Saturday morning for a very worthy cause.