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.
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.”