Portal de Totana
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The Plenary Session of the City Council of Totana unanimously agreed at its last ordinary session, at the initiative of the Mayor's Office, to urge the Ministry of Health to expedite the necessary procedures to ensure the supply by the National Health System of the only authorized treatment in Europe for lipodystrophy, metreleptin, guaranteeing access in equity and equality to all patients who need it in the different Autonomous Communities of Spain.
Lipodystrophy is an ultra-rare and chronic disease, composed of a set of congenital or acquired disorders associated with the loss of adipose tissue.
A classification can be made according to its etiology, being congenital (genetic) or acquired, and according to its anatomical location, being able to be generalized, partial or localized.
Lipodystrophy is a rare condition with a worldwide prevalence of 0.2-1.0 cases / million for the generalized form and 1.7-2.8 cases / million for the partial form.
In the only Spanish Reference Center for Lipodystrophies, 99 patients with lipodystrophy have been detected, with 19 patients with generalized lipodystrophy and 80 with partial lipodystrophy
The lack of subcutaneous adipose tissue causes a decrease in the level of leptin in the body and the ability to store lipids, so they accumulate abnormally in other organs.
Lack of leptin causes the early development of serious metabolic disorders such as insulin resistance (diabetes), hypertriglyceridemia, hepatic steatosis, pancreatitis, renal and cardiovascular disorders, etc.
that lead to a deteriorated quality of life and an early death.
The average age of death in lipodystrophic patients is lower than the general population, being 12 years for patients with generalized congenital lipodystrophy, 32 years for generalized acquired lipodystrophy, 28 years for partial family lipodystrophy and 23 for partial acquired lipodystrophy.
The therapeutic approach of lipodystrophies has a double aspect, on the one hand, the prevention and treatment of associated metabolic and cardiovascular disorders, and on the other, the cosmetic treatment produced by the loss and accumulation of adipose tissue.
Metreleptin (Myalepta) is an orphan drug;
and it is the first and only authorized drug in Europe for the treatment of lipodystrophies since July 2018.
Source: Ayuntamiento de Totana
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