Nutrition for Duchenne

Nutrition, hydration and activity go hand in hand with being healthy for all individuals and is especially true for those with Duchenne. Poor nutrition affects all systems of the body. Poor nutrition does not just refer to eating frequent fast food. It can be a wide range of issues. Each person is unique and might require one on one help figuring out the proper nutrition regimen. For this reason, many multidisciplinary Duchenne clinics offer dietary and nutritional support and can include a dietician consultation. If not, please ask your primary physician for a referral for a dietician.

The Dietary Guidelines for Americans describe a healthy diet as one that:

  • Emphasizes fruits, vegetables, whole grains, and fat-free or low-fat milk and milk products;
  • Includes lean meats, poultry, fish, beans, eggs, and nuts; and
  • Is low in saturated fats, trans fats, cholesterol, salt (sodium), and added sugars.

Proper nutrition is part of the equation for a better outcome. The goal is to prevent under or malnutrition as well as being overweight or considered obese. A well balanced diet is important and can also assist with relieving and preventing constipation and gastroesophageal reflux disorder.

Even a referral for feeding tube, which can be a frightening thought at some point might be the right choice if someone is not able to ingest appropriate amount of nutrients by mouth and not able to maintain a healthy weight.

Staying active is also part of the dietary equation. With Duchenne it is important to get enough activity to stave off both weight gain and disuse muscle atrophy but not too much to cause muscle damage. Even someone who is not able to ambulate should find a means to get some mobility; such as through physical therapy program, swimming, and assisted stationary bicycle training.

People with Duchenne muscular dystrophy have additional dietary and possibly supplemental nutrition needs due to chronic steroid use. It is documented that there is a higher incidence of diabetes for those on steroids and many crave a higher intake of sugary and salty foods leading to more water retention and weight gain. Being overweight adds stress to the muscular system and can make activity more difficult. All people with Duchenne should be followed by an endocrinologist for evaluations and recommendations in this area.

There are certain supplements that are mentioned and recommended by Duchenne specific physicians and articles; such as calcium, Coenzyme Q and vitamin D. Everyone should check with their physicians before starting a supplement regimen as all recommendations, doses and uses are individualized.

Nutrition alone cannot stop the overall effects of Duchenne but being healthy will give you the best chances at delaying secondary effects which would cause worse progression of the disease.

  1. Bushby, K. et al (November 30, 2009) Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. The Lancet, Neurology. doi: 10.1016/S1474-4422(09)70272-8
  2. Leighton, S. (2003) Nutritional for boys with Duchenne muscular dystrophy. (Review). Nutrition & Dietetics. vol. 60. 11-16.
  3. Davidson, Z et al, (2009). A review of nutrition in Duchenne muscular dystrophy. Journal of Human Nutrition and Diet, 22; 383-393.

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