- International Prader Willi Syndrome Day is commemorated every May 30.
- This condition has this name in honor of the specialists Andrea Prader, Heinrich Willi and Alexis Labhart, who in 1956 described the signs and symptoms that make it up.
- To date there is no cure and its approach is interdisciplinary based on supervised diet and hormonal therapy, and specialists in endocrinology, neurology, behavior, nutrition, physiotherapy, psychiatry and genetics intervene.
It is seldom talked about Prader-Willi syndrome and one of the consequences is its late diagnosis. Among the characteristics of the patients are thyroid problems, elevated glucose, short height, severe weight gain due to lack of satiety and hypotonia.
Current panorama in Mexico
For its part, it is estimated that in Mexico one in every 30,000 girls and boys is born with this genetic disease. And the most serious thing is that when it is not identified in time, the patient’s life expectancy can be reduced.
People can also present with intellectual disability, delayed puberty, low levels of sex hormones, and neuropsychiatric problems such as psychosis, attention deficit disorder, psychotic disorder, and autistic visage.
May 30 | International Down Syndrome Day #PraderWilli
Treatment is interdisciplinary with specialists in endocrinology, neurology, nutrition, physiotherapy, psychiatry and genetics.
– HEALTH Mexico (@SSalud_mx) May 30, 2023
Detection from the first months of birth facilitates their management, treatment and control, which allows them to live more years with quality of life, reported the person in charge of the Prader Willi Syndrome Diagnostic Laboratory of the National Institute of Genomic Medicine (Inmegen)Luis Leonardo Flores Lagunes.
He specified that the International Prader Willi Syndrome Day It is commemorated on May 30 to sensitize and inform health professionals and the general population about this condition that is due to a genetic alteration in a part of chromosome 15, inherited from the father.
This disease is not preventable and has no cure. The approach is interdisciplinary based on supervised diet and hormonal therapy, and specialists in endocrinology, neurology, behavior, nutrition, physiotherapy, psychiatry and genetics intervene.
Disease that is rarely identified in time
The person in charge of the Diagnostic Laboratory pointed out that due to the lack of knowledge of Prader-Willi Syndrome, mothers or fathers of family can confuse it with other conditions. In this context, she said that girls and boys should be taken to health services on suspicion that it may be about this disease.
During childhood, it is usually not found on checkups unless the symptoms are very clear. As of adolescence, all the characteristics appear and the person has behavioral problems and decreased intellectual capacity, language and neurological development.
The specialist indicated that the National Health System has clinics, medical units and specialized personnel in neurodevelopment, orthopedics and pediatrics to provide medical care to patients with this disease.
He pointed out that Inmegen specializes in the diagnosis of the disease through genetic study, and provides detection and follow-up services for these patients.
International PWS Day is promoted by the International Prader Willi Syndrome Association (IPWSO)to inform the population about the existence of this health problem and the need for its timely detection.
The condition received this name in honor of the specialists Andrea Prader, Heinrich Willi and Alexis Labhart, who in 1956 described the signs and symptoms that make it up.
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