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On June 23, we celebrate the International Dravet Syndrome Day for more and better knowledge and wide awareness of the issues related to this Syndrome.

Dravet syndrome is a rare progressive encephalopathy that manifests itself in children from 4 months of age and was only described in 1978, characterized by severe seizures and fevers, very resistant to treatment with medicines.

With advancing age, other types of seizures develop, more severe and more constant, as well as other symptoms such as cognitive impairment, ataxia and behavioral changes.

This syndrome results from a sporadic mutation in a gene that is important for the functioning of several cells, including those in the nervous system.

It is not usually hereditary, which means that other family members, such as siblings, are not usually affected.

You have a high early death rate from neurological problems, infections, accidents or sudden death.

The most common problems of the disease are:

As for the incidence in the population, it is a rare disease, with an estimated rate of 1 case per 22,000 births. In Portugal, about 100 cases are known to be correctly diagnosed.

More information on Dravet Portugal website.