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Of the Present

Because of Cystic Fibrosis (CF), patients face demanding nutritional challenges. The typical patient with pancreatic insufficiency must prepare and eat 3,000 to 5,000 calories a day to maintain weight. This many calories:

  • Requires effort, time and money to obtain and prepare the food
  • Robs patients of the ability to savor well-cooked meals,
  • Creates unexpected social barriers
    • Parents of patients and adult patients with families often cook two meals at a time, one high calorie for the patient and one regular calorie for everyone else
    • Even at a family table, different meals set patients apart and increase social isolation.

Currently, a dietitian meets with patients and provides guidance about foods, recipes and nutrition goals. It is the responsibility of the patient to implement the advice.

Of the Future

Our center not only wants to teach patients how to manage their nutritional needs, we want to show them in a fun and interactive way. Imagine a demonstration kitchen where a guest chef could bring a popular recipe picked from his or her restaurant menu. After adaptation for a home kitchen, the chef could teach a patient or a family how to cook the item with an easy branch point that leads to two versions of the dish. This will allow everyone to essentially have the same meal. Using video and social media, we could share the experience with other patients and families. We envision a menu of many dishes specifically designed to help patients and families grappling with CF nutritional needs. We would supplement each video with a short discussion between the dietician, the chef and the patients about the nutrition, ingredients and costs.

It is a victory that so many patients with CF are newly independent young adults; others are newlyweds and may need additional cooking skills. We could use the kitchen as a uniquely well-equipped classroom to teach basic cooking, one-on-one. Our dietitians could use the kitchen to teach important medical tasks like estimating calorie and nutrition content of specific foods or preparing tube feedings or other supplements.