Dr. Javier de las Heras, coordinator of the Metabolism Unit of the Hospital Universitario de Cruces, in Bilbao, talks about Lysosomal Acid Lipase Deficiency (LAL-D) in an interview with him in Diario de Burgos.
In this interview he explains that he has participated in the development of a website aimed at patients and their families, which places special emphasis on food since it is essential for the good quality of life of these people who follow a diet low in fats.
LAL-D your way is the name of this website (https://laldyourway.com/es) that contains a large amount of useful and reliable information to manage the disease, something that, in the words of the journalist, Spanish Association of Patients AELALD, which has also participated in its launch, has received with enthusiasm since some of the biggest problems that people with rare diseases encounter is the lack of reliable sources about their pathology and a great feeling of loneliness: «People who have a rare disease, and especially one as rare as this one, are often afraid of falling into oblivion and that nothing will be done for them because there are even a large majority of doctors who are unaware of these diseases. pathologies, so the initiative has been very well received", says the pediatrician.
In addition, Dr. de las Heras explains the difficulties in managing the diagnosis of this unknown disease by Primary Care. As people who suffer from this disease are asymptomatic, it has to happen that an analysis is done for whatever reason, that these alterations appear and that whoever sees them thinks of this disease.
Javier de las Heras, who is also an associate professor at the Faculty of Medicine of the University of the Basque Country and coordinator of the Hereditary Metabolic Diseases Group, Biocruces-Bizkaia Health Research Institute, considers maintaining very direct contact a fundamental part of his work with smaller hospitals in the autonomous community and with Primary Care through talks and other training activities "and that professionals can quickly ask me any questions they have about their patients".
The website includes a guide on macronutrients, diets for children and adults and recipes - information that has been provided by Cèlia Rodríguez-Borjabad, dietitian nutritionist at the Vascular Medicine and Metabolism Unit of the Sant Joan de Reus University Hospital -, as well as of other tips for these patients to have a healthy quality of life.