Families living with the dravet syndrome They know very well that Heat can be a silent enemyNow, a joint study by the King Juan Carlos University and the Dravet Syndrome Foundation of Spain confirms this with data: high temperatures not only increase the frequency of epileptic seizures, but also make them more intense and longer lasting.
The qualitative research gathered testimonies from mothers and fathers of affected children to understand how heat waves affect this rare and serious disease. The results, recently published, offer valuable insights for healthcare professionals. recommendations more in line with daily reality of these families.
The impact of heat on epileptic seizures
According to Domingo Palacios, a researcher with the Hum&QRinHS group, the parents reported that the heat waves and high temperatures The seizures were clearly worseningNot only were there more frequent crises, but each one lasted longer and was more difficult to control. Furthermore, sudden temperature changes, such as going from an air-conditioned environment to the street, and exposure to water, for example, when swimming in pools, also acted as triggers.
Additional triggering factors
The parents also mentioned other heat-related factors that could trigger the crises. For example, dehydration or simply being in a very hot environment without any way to cool down. The research, which used in-depth interviews with open-ended questions, allowed families to freely express their experiences without being confined to closed options, which enriched the findings and provided a more complete view.
Coping strategies of families
To address these risks, parents have developed a series of thermoregulation measures. These include dressing children in light clothing, keeping indoors cool, limiting outdoor activities during the hottest hours, and, in some cases, empirically using antipyretics to lower body temperature. These practices, while not always formally supported by science, are fruit of everyday experience and can serve as a basis for future clinical guidelines.
The work carried out by URJC and the Dravet Syndrome Foundation of Spain makes it clear that heat is a risk factor that cannot be ignored. The strategies already used by families, together with the evidence gathered, open the door to improving the quality of life of patients already affected. to raise awareness about the need to continue research in this line.