The International Association of Relatives and People Affected by Lipodystrophies AELIP, presented two posters at the XII International Congress of Rare Diseases held in Murcia on November 15th and 16th.
On the one hand, the results and conclusions of the international cooperation action developed during 2018 and 2019 in Peru were presented.
RESULTS:
A total of 14 people were included in the Socio-Sanitary Needs Study and it was found that 100% of them suffer from Berardinelli's Syndrome and do not receive any kind of treatment.
78% are available to travel once a year for a medical check-up.
71% say that their economy does not allow them to have a balanced diet,
64% consider that the disease has mainly influenced social rejection.
78% have needed an information and guidance service at some point. 100% state that the most important needs to be met are medical and economic.
CONCLUSIONS:
In Piura there is a focus of people affected by Berardinelli-Seip syndrome, these families have scarce resources being their subsistence economy. More actions are needed to improve the knowledge about the diagnosis and treatment of the infrequent lipodystrophies.
On the other hand, a poster was presented to emphasize the importance of the diagnosis in Lipodystrophies and how to carry out an approach to it through all the formative and technological matter implemented by the entity in collaboration with The University Hospital Complex of Santiago de Compostela, the Unit of thyroid and metabolic diseases and the Galician health service.
The main results and conclusions presented were the following:
RESULTS:
These tools have been developed as a reference in lipodystrophies, providing fundamental resources to people who live with a rare lipodystrophy in the world, family and students, favoring in turn, a greater knowledge about the pathology to both health professionals and the rest of the society concerned.
CONCLUSIONS:
The development of these materials and tools has allowed to improve the knowledge about infrequent lipodystrophies, guiding and helping pediatricians, endocrinologists and primary care doctors to diagnose, characterize and treat the different types of infrequent lipodystrophies.
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