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Vacunación en el síndrome de Dravet

vacunacion Dravet

La Federación Europea del Síndrome de Dravet, de la cual formamos parte como Fundación española oficial, presenta el resultado de la encuesta “Vacunación en el síndrome de Dravet”, un estudio conjunto de más de 15 organizaciones nacionales de pacientes que reunió en 2018 datos de 319 cuidadores, entre ellos 31 españoles.

El estudio ha analizado la correlación entre la vacunación y la primera convulsión, así como las pautas seguidas por los cuidadores tras la primera vacunación. Os dejamos abajo un resumen de las conclusiones sacadas del estudio, pero podéis ver todos los resultados detallados en esta infografía.

✔️ El 98% de los pacientes tenían un diagnóstico Dravet confirmado; el 93% presentaban mutaciones en el gen SCN1A.
✔️ En el 39% de los pacientes, la primera crisis epiléptica tuvo lugar tras una vacunación, y el 67% de esos pacientes presentó fiebre tras dicha vacunación.
Se cree que la correlación entre la vacunación y la primera crisis epiléptica podría estar sobreestimada por los padres, ya que en el 10% de los casos la crisis ocurrió entre 8 y 28 días tras la vacuna, períodos muy largos como para asociarse a las vacunas que se administran en niños tan pequeños, las cuales suelen generar una reacción generalmente a las 24-48 horas de su administración. De todas maneras, si tomamos en cuenta dicha sobreestimación, es decir, si quitamos del conteo a ese 10%, parece que la primera crisis epiléptica aparece tras la vacunación en el 29% de pacientes con síndrome de Dravet, un dato que concuerda con lo que ya se conocía de la literatura.
✔️ El 77% de los cuidadores encuestados mantuvo en mayor o menor medida el calendario de vacunación tras esa primera vacuna (39% en la manera habitual, 22% de manera parcial y 16% pospuso las vacunas), mientras que el 23% de los cuidadores rechazó las vacunas posteriores.
De los 31 españoles encuestados, el 48% vacunó de manera regular y sólo un 6% rechazó la vacunación.
✔️ Del 77% de encuestados que decidió continuar con la vacunación, el 75% adoptó medidas preventivas. De este 75%, el 55% lo hizo bajo el consejo médico y el 45% por decisión propia o siguiendo el consejo de otros padres.
Los médicos españoles se ponen a la cabeza de la lista europea en cuanto al consejo a las familias sobre la adopción de medidas preventivas en torno a la vacunación; el 62% de los cuidadores españoles tomaron dicha medida por consejo médico, en comparación con, por ejemplo, el 12.5% de los noruegos encuestados.
✔️ La mayoría de los cuidadores (65%) usó antipiréticos como medida preventiva para evitar crisis en torno a la vacunación, comparado con un 14% que acudió a la prehospitalización del paciente, y un 11% que hizo uso de las benzodiacepinas.
✔️ Cuando la primera crisis no ocurrió como consecuencia de la vacunacón (61% de los encuestados), la crisis fue generada por una fiebre en el 42% de los casos, por otras causas para el 23% de los pacientes, y sin causa aparente para el resto (35%).

¿Qué se exige a la comunidad científica desde la DSEF?:
👉 Un mejor estudio de las crisis epilépticas asociadas a la vacunación en el síndrome de Dravet y otra encefalopatías asociadas.
👉 La programación de medidas preventivas para cada tipo de vacuna cuando se trate de pacientes diagnosticados con síndrome de Dravet.
👉 Que se determinen las mejores medidas de prevención en pacientes con síndrome de Dravet.

⚠️Os recordamos la IMPORTANCIA DE VACUNAR a vuestros hijos.
No hay evidencias que demuestren que las vacunas en sí producen epilepsia. La fiebre consecuencia de la vacunación parece ser la causante, y no siempre, de algunas crisis. Sin embargo, no vacunar a nuestros hijos les ocasionaría un sinfín de infecciones, las cuales provocarían procesos febriles de igual o mayor calibre. Además, vacunando a nuestros hijos, y a nosotros mismos, protegemos al resto de la sociedad. La no vacunación puede conllevar problemas sanitarios globales como el que estamos viviendo en la actualidad por la COVID-19. La solución: ¡consultad con el médico cuál es la mejor manera de prevenir los procesos febriles y crisis epilépticas en torno a cada vacunación!⚠️

Un sueño, una meta.

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TERMS & CONDITIONS

The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Friday 1st of April 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at research@dravetfoundation.eu.

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling and accommodation costs or any other personal expenses.

Admittance to the workshop without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 1st of April at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at research@dravetfoundation.eu within a minimum of 10 days
prior the event. Failure to attend the event without prior written notification
by email may incur a no-show fee, which shall cover individual organizational,
material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The Dravet Syndrome Conference 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Thursday 31st of March 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at research@dravetfoundation.eu.

The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 31st of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks. 

Cancellation Policy
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at research@dravetfoundation.eu within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.