Costa Almeria council Cuevas del Almanzora does its bit to raise awareness about rare form of life-threatening epilepsy

AIM: The council has joined the initiative to promote and develop investigation into Dravet Syndrome CREDIT: Ayuntamiento de Cuevas del Almanzora

Cuevas del Almanzora Council is doing its bit to raise awareness about a rare form of life-threatening epilepsy.
Today June 23 is International Dravet Syndrome Awareness Day, and the council has been lighting up the town hall building and the bridge over the River Almanzora in purple to mark the day and to join in with the initiative to promote and develop investigation into this rare illness.

CREDIT: Ayuntamiento de Cuevas del Almanzora

The day was created seven years ago by the Dravet Syndrome Foundation and other international organisations. The aim is to give greater visibility to the rare illness and to raise society’s awareness of the daily challenges and difficulties it creates for sufferers and their families. Also to highlight the need for investment in investigations to ease the effects of the condition and improve the life of sufferers.
On its website the Dravet Syndrome Foundation describes the illness, also known as severe myoclonic epilepsy of infancy (SMEI), as “a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.”
It says current treatment options are “limited”, while “the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life.”

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Written by

Cathy Elelman

Cathy Elelman is the local writer for the Costa de Almeria edition of the Euro Weekly News.

Based in Mojacar for the last 21 years, Cathy is very much part of the local community and is always well and truly up on all the latest news and events going on in this region of Spain.

Her top goals are to do the best job she can informing the local English-speaking community, visitors to the area and the wider world about about the news in Almeria, to learn something new every day, and to embrace very new challenge this fast-changing world brings her way.

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