Muscular dystrophy, a group of genetic diseases that leads to the weakening and loss of muscle mass, is a condition that is close to my heart. It’s something I have worked closely with in my career and seen firsthand its impact it has on its families.
That’s why Feed to Succeed is proud to support the Burn Boot Camp in Glenview fundraiser for the Muscular Dystrophy Association (MDA) by donating a nutrition evaluation session to their silent auction. The “Be Their Muscle” fundraiser starts at 8AM with a silent auction alongside the radio personalities from 102.3. At 9AM, there is a free bootcamp work out.
We use our muscles to chew, swallow, digest and move stools through our bodies. With the weakening of these muscles, eating and nourishing our bodies becomes progressively more difficult. Registered dietitians are a regular part of the muscular dystrophy healthcare team.
Patients with a muscular dystrophy diagnosis can often be underweight, overweight, malnourished (regardless of their weight), have difficulty swallowing, are unable to feed themselves and can also be constipated. Their often long medication list just further complicates the picture.
Working with muscular dystrophy patients, I often managed enteral feeding regimens (tube feeding) and oral feeding recommendations (in conjunction with a speech-language pathologist). My role was to assure the regimen supported optimal growth and development, was not contradicted with medications, and was something the patient was able to tolerate from a gastrointestinal perspective.
Along with a pediatric pulmonologist I worked alongside with, Dr. Girish Sharma, I wrote a chapter on nutrition in neuromuscular disease in a pediatric pulmonary disease book. The chapter further details how nutritional status can be impacted in muscular dystrophy.