The mayor of Leganés, Santiago Llorente, and the President of the Association who works to improve the quality of life of people who suffer from this syndrome, María de los Ángeles Zarza, have signed an agreement for the assignment of a space municipal destined to the start-up of what will be the first residence for these people in all Spain. As he has told ‘Today for Today, Madrid South’, Zarza, is about providing a housing/residential alternative to adults with Prader Willi syndrome. It will be the third residence of this type in Europe, a model that the association proposes to replicate in other parts of the country.
The iframe code has been copied to the clipboard
–
–
This syndrome, classified as a rare disease, occurs in one in 15,000 births, It is also known as the ‘thousand symptoms’ disease because it has many symptoms. “Now since they are newly born is being diagnosed. We did a bell in all units of neonatology of Spanish hospitals so that when they saw a baby with a very important hypotonia, that barely moved, they do not suck … diagnostic test to confirm. From there there is a very important job to do from when they are little, ”says Zarza.
It is a disease that needs a 24 hour caregiver due to the complexity of its symptoms. He affirms that “in adulthood there comes a time when parents find it very difficult to care for them and they can no longer be at home. The Generalist residences are not worth us because they need very specific care and a exhaustive control of food “. They are people who one of the things that affects them the most is that the “hypothalamus does not work and do not regulate the satiety of eating, so they are constantly hungry and an enormous anxiety to get food. The residence has to be a place without a kitchen, with external catering and a ratio of caregivers of one per person ”, he says. Another problem is behavior. “The frustration of not getting food affects them a lot and that is why they need a routine, exercise and know that there are no options to get the food for you be calm and be happy. Something specific had to be done for them and this is a first step, ”says Zarza.
The forecasts are that the Leganense residence can be inaugurated at early next year, on Calle Fraternidad, in the Los Tilos de Leganés neighborhood.
–
–
