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Telling Stories logoWhy should dietitians be interested "Telling Stories"?

www.tellingstories.nhs.uk

 

"Telling Stories: Understanding Real Life Genetics" is a web-based resource that has been developed to promote understanding among all health professionals of the impact genetics has on real life, and its relevance to healthcare practice. The website draws on stories that cover a range of genetic conditions including single-gene disorders (with autosomal dominant, autosomal recessive and X-linked inheritance patterns), chromosomal disorders and multifactorial conditions such as cancer and heart disease.

As well as being of interest to "specialist" dietitians working in genetic conditions, the collection should also be of interest to other dietitians working in a range of practice areas. The fact that "genetics" is involved may not necessarily be the main source of interest in these stories, but they nevertheless help to explain where health practice is affected by genetics and the issues surrounding it.

  • For example, trainee dietitians may be interested in understanding different areas of health care with a view to working in a particular field. Educators could use the stories to illustrate different areas of health practice, and at the same time learning something about the role of genetics and family history.
  • Dietitians may find the stories are useful to help understand the roles of different healthcare professionals in the treatment of various conditions, which may be of benefit to multi-disciplinary care teams.
  • Diet, Lifestyle and Family: As well as rare conditions, some stories feature common conditions that are familiar to dietitians. "Graham's Story: Like father, like son?"   is the story of a patient who, following a heart attack, discusses the history of heart conditions in his family with a health professional. He talks about the implications with his children, and as a result he and his family take positive steps to improve their diet and lifestyle. The story is a good example of how family history information can be used to benefit patients and families in the area of common, multifactorial disease.

A dietitian may still work with many patients with a genetic condition, even if the dietetic intervention is not directly affected by the genetic basis of the condition. For example:

  • Nutritional Support: Many dietitians are involved with people who are at risk of malnutrition and require "nutritional support" . Examples of stories in the collection about conditions which may involve nutritional support include Cystic Fibrosis and Huntington Disease.
  • Weight control in patients with chromosomal disorders: Prader-Willi syndrome and Down syndrome are two examples of chromosomal disorders. People with these conditions may find it more difficult to control their weight than other people. A dietitian may help patients to ensure that they are getting a healthy, nutritious, and well-balanced diet. Meriel's Story describes how parents of a child with Down syndrome made sure their daughter had a healthy diet.

Alternatively, many inherited metabolic disorders can directly involve specific dietary components in their aetiology. Although it is very rare in the population (around 1:100,000), Alkaptonuria is an example of a single-gene disorder where specific dietary components have a direct effect on the disease, at least in children. The Alkaptonuria story is a good example of the importance of health professionals being aware that some disease may have a genetic cause.

 

 

Last updated: 20 October 2011

Teaching Genetics