The International Association of Families and People Affected by Lipodystrophy has carried out a survey of those affected by lipodystrophy and their families in order to find out their preferences and suggestions for the 7th Lipodystrophy Symposium which, this year, will take place between the 3rd and 6th October. Fifteen people responded to the survey and their answers will help AELIP to understand which topics are the most relevant to the conference events programme. Burgos will welcome the Symposium this year, after 6 years of Murcia hosting the event.
Some 93% of those who responded to the survey said that they would like to see this year’s Symposium offer a range workshops/talks about self-care, personal image and cosmetic treatment. The same percentage of respondents would like for more information to be included about defending patient rights.
Similarly, 93% of survey respondents would appreciate workshops/talks about diet and nutrition with lipodystrophy, while 66% would like to receive more information about alternative medicines and the risks associated with them.
For 80% of survey respondents, workshops or talks about the European Consortium of Lipodystrophies and the advantages of working as a network would prove interesting, and 86% would be interested in other workshops or talks about self-care groups.
Similarly, 86% of those who responded to the survey believed it would be beneficial to offer workshops or talks about physiotherapy and therapies specifically aimed at lipodystrophies.
Along with other matters that may be addressed at the Symposium, the survey respondents propose discussions about living with liposuction and other operations to remove concentrations of fat, and circulatory problems of the legs arising in syndromes which cause the accumulation of fat in the lower body.
Other proposed topics include psychological care, how to live with the syndrome, and self-acceptance.
Support in school; the role of the carer, their importance, and tools to tackle their difficult mission; or pain and how to relieve it, are some other suggested topics for discussion, as well as how to keep abreast of the latest advancements in research about different types of lipodystrophies, and education surrounding diabetes and other chronic illnesses related to lipodystrophies.
Lastly, participants have shown interest in talking about other types of help for those affected, as well as psychological approaches to living with a lipodystrophy disorder.
