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To improve the quality of life of people with Prader Willi Syndrome, it is necessary to build a residence that provides them with comprehensive care.

Prader Willi Syndrome is one of the most frequent Rare Diseases. People who suffer from it suffer serious difficulties every day of their lives. Given the complexity of the disease, which has a decisive influence on physical and psychological development, it is essential to create a specific home that meets all the needs of people with this disorder.

43

Donations

€1,095

Donated of €1,095

100%

Funded

Construction of the Thousand Differences Residence to meet the needs of people with Prader Willi Syndrome
SPAIN

A campaign by

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30

Direct beneficiaries

Those people who have naturally benefited from the campaign's interventions

90

Indirect beneficiaries

Those identifiable people who will potentially receive an effect from the campaign's activities

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Description

People who suffer from Prader Willi Syndrome (PWS) suffer serious difficulties every day of their lives, with important complications that extend to each of the vital functions that make up the human being and that generate a peculiar existence.

The educational, social and work development of a person diagnosed with this syndrome is a path that they will never be able to travel alone, since a large part of the symptoms they suffer will require the support and / or vigilance of another adult who takes responsibility for their health and behaviour. It is a genetic alteration that mainly affects the central nervous system. The influence of this disorder on the body is irreversible and extensive, with development at a physical, psychological and social level being seriously compromised.

Those affected by PWS do not receive the signal of nutritional satiety and suffer from a continuous urge to eat, risking their lives many times to find food. In addition, the disease causes sleep disorders, breathing and body temperature problems, incomplete development of sexual characteristics, learning and language problems, and very serious behavior problems.

Given the unique complexity, which decisively influences the physical and psychological development of those who suffer from this disease for life, the only possible conclusion is that the creation of a specific residence for people with this disorder is essential. The bibliography and experience show that good management of environmental variables can favor the quality of life of people with Prader Willi Syndrome and, of course, that of their relatives. In Spain there is still no center of these characteristics.

Campaign objectives

Improve the quality of life of patients with Prader Willi Syndrome and their families, through the construction of a specific home that meets all their needs. Starting from the idea that it is impossible to treat a symptom without treating the whole person, the overall objective as a work team will be the comprehensive care of the disease:

  • Evaluate: using a constant clinical observation position.
  • Take care of somatic and psychological symptoms.
  • Diagnose unidentified problems at the behavioral level.
  • Prevent: through therapeutic education that prevents relapses.
  • Reduce weight and / or behavior problems.
  • Evaluate the cognitive and behavioral profile.
  • Accompany in the work of separation with the family.
  • Support and facilitate respite for families or institutions.
  • Socialize and promote positive interpersonal relationships.
  • Prepare an orientation or a life project
Activities

From the Spanish Prader Willi Syndrome Association they want to build a specific home to cover all the needs of people with Prader Willi Syndrome: the Thousand Differences Residence.

In this residence, comprehensive care will be carried out and will have psychological services, physiotherapy, nursing, social worker support and various workshops. Some of the activities that will take place in the residence are the following:

  • Feeding control
  • Treatment of behavior problems
  • Support for physical symptoms, management of communication difficulties
  • Performing frequent physical exercise
Who will benefit?

Patients with Prader Willi Syndrome and their families will improve their quality of life thanks to the construction of the Thousand Differences Residence and the comprehensive care that will be provided there.

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