Portal de Molina de Segura
www.portaldemolina.com
| The initiative seeks to give visibility to the disease, while trying to alert and raise awareness to society of the challenges and difficulties that people who suffer from it have | The two new pavilions of the Ciudad Deportiva El Romeral will be illuminated in purple on the night of next Tuesday, June 23, International Day of International Dravet Syndrome Day, with the aim of giving visibility to this rare disease, while The aim is to alert and make society aware of all the challenges and difficulties that people who suffer from it have in their day to day. The Molina de Segura City Council thus adheres to an initiative, proposed at a national level, by the Dravet Syndrome Foundation, with the intention that public administrations and private entities help to make this syndrome visible through the lighting in purple of iconic buildings and monuments. Dravet syndrome is epilepsy of genetic origin that has no cure and does not respond to any current treatment.
It is also known as "catastrophic childhood epilepsy" and affects 1 in 16,000 people.
It appears during the first year of life and causes uncontrolled epileptic seizures, cognitive delay, mobility problems and language delay, in addition to a 15% mortality rate. The lighting in purple of the new pavilions of the Ciudad Deportiva El Romeral, on Tuesday, June 23, will be at 9:30 p.m., thus joining many other buildings throughout the national territory that will become a symbol of the struggle for people suffering from Dravet Syndrome and their demand for investment in research to alleviate the effects of the disease.
Source: Ayuntamiento de Molina de Segura
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