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Euro Huntington's disease network [logo]
Standard of Care - Dieticians -
Welcome to the Standard of Care Subgroup about diet in HD.

Why should you concern yourself with your diet/nutrition?

We eat daily, several times a day, sometimes quickly and other times quite deliberately (conscientiously). Eating means company, indulgence and foremost is essential. But what happens if this matter-of-fact behavior is suddenly limited or even becomes impossible?
This question leads to the conclusion that the factor “diet/nutrition” may not be neglected if Huntington Disease needs to be understood and a better quality of life should be enabled for the parties involved!
Symptoms such as cognitive deficits, chorea, psychic changes, etc. are described rather well during the course of the Huntington Disease and are thoroughly treated. Cachexia and undernourishment as well as dysphagia are known but there are few clinical trials for these.

The dietician working group arose out of a substudy group of the EHDN Standard of Care WG (SoC) with the goal to create studies in the area of nutrition and advance them. The members are all dietician experts who are confronted daily with the troubles, worries and problems of the Huntington afflicted. Concurrently; there is a close interdisciplinary working collaboration with speech and physical therapists.
The tasks of this group are not only the studies, but also to develop standards for the best possible care for the patients in all stages of the disease. This encompasses the calorie requirement, the own suitable nutrient relation, the declaration for nutrition help, the selection process of the foods, etc.