A Nutrition Handbook For Families Of Children With Duchenne Muscular Dystrophy: A Collection Of Tips And Recipes For Healthy Living
Sappah, Lindsay
Citations
Abstract
Title: A NUTRITION HANDBOOK FOR FAMILIES OF CHILDREN WITH DUCHENNE MUSCULAR DYSTROPHY: A COLLECTION OF TIPS AND RECIPES FROM DIAGNOSIS TO HEALTHY LIVING Introduction: Muscular dystrophies, a heterogeneous group of disorders, can manifest clinically, genetically and/or biochemically. Duchenne Muscular Dystrophy (DMD) is the most prevalent inherited muscle disease of childhood. DMD is a severe, progressive genetically fatal disease of skeletal muscle wasting, respiratory insufficiency and cardiomyopathy. Boys are predisposed after being born from a woman who is a carrier. Women act as carriers and although affected men appear normal at birth, steady muscle weakness and wasting are first apparent in proximal limb muscles. Typically, a DMD diagnosis is found in the first few years of life. The standard treatment for boys with DMD is oral glucocorticoids (GC). GC’s preserve muscle strength and prolong walking in boys with DMD. Long term use of GC has resulted in obesity, short stature, pubertal delay and an increased risk of long bone and vertebral fractures. For nutrition recommendations for people with DMD, it is imperative that obesity prevention is a north star, or at the least, anticipatory guidance should be provided as steroids are introduced. Preventing obesity and unwanted weight gain can enable patients to be more mobile, ease the transfer for caregivers and reduce any complications or issues with sleep like disordered breathing. Purpose: Patient advocacy groups are intended to bring communities together in times of hurt and need, hold educational events, and provide resources. In the DMD community there is a large presence of patient advocacy, but little focus on the nutritional needs of this patient population. The DMD diagnosis is difficult, and the treatment is cumbersome. Methods: The handbook of nutrition knowledge and recipes will include recipes that last the journey of DMD, from the time that they are diagnosed at ages 2-5 to adulthood. With the advancements in treatment our patients are living longer, and quality of life can be improved by understanding adequate and proper nutrition to maintain their lifestyle. Results: This handbook will be a comprehensive collection of recipes for both existing popular variations of favorites like smoothies, breakfast, lunch and quick family dinner favorites as well as new recipes currently developed. Together they will provide an adventure of culinary fun for these families and meet their nutritional needs. The content will cover basic nutrition concepts to familiarize consumers with essential macronutrients, micronutrients and their impact on the body. It will also cover food groups and dietary guidelines for guidance on balanced meals with a specific focus on the needs of DMD through the various stages of life as the disease progresses. Conclusions: The handbook will be distributed to the Duchenne advocacy groups listed in this review as well as comprehensive multidisciplinary care teams and centers that have a resident registered dietitian on staff who can utilize this handbook in their practice as a tool and resource for their patients.
