Entrevistamos a Laia Turón Viñas

Hoy os presentamos a Laia Turón Viñas, neuropediatra en hospital de Sant Pau, donde forma parte de un gran equipo humano. Pocas personas mejor que ella saben la importancia de que «el cuidador se cuide a sí mismo». Junto con Laia, desde la Fundación Síndrome de Dravet, queremos que los cuidadores no os olvidéis de vosotros mismos: «Si no estás bien, no puedes cuidar bien». El autocuidado es imprescindible para cuidar a los tuyos. En esta entrevista verás cómo es el estilo de vida de alguien especializada en Neuropediatría y Cuidados Intensivos Pediátricos, y los consejos que tiene para familias y sociedad.

INTRODUCCIÓN

¿Por qué quisiste ser médico?
De pequeña descubrí que quería ser médico para ayudar a las personas. El interés por la investigación vino después.

¿Cuándo descubriste tu vocación?
Mi padre es médico. De pequeña le oía explicar sus historias del hospital y probablemente eso despertó mi interés por esta profesión.

¿Te apoyaron tus padres en tu decisión?
Sí, a pesar de saber lo duro de la formación continuada, las guardias,…

CAMINO ACADÉMICO

¿Has hecho un posgrado? ¿Cuál?
Sí, tengo un máster en neuropediatría y un «fellowship» en epilepsia. Además, tengo formación en cuidados intensivos pediátricos, por lo que me dedico preferentemente a la atención urgente de la patología neurológica.

¿Cuál es tu especialidad?
Neuropediatría y Cuidados Intensivos Pediátricos.

¿En qué consistió tu tesis doctoral?
El Hospital de Sant Pau cuenta con una unidad de trasplante de progenitores hematopoyético pediátrico que realiza trasplantes desde hace más de 40 años. Mi tesis analizó la aparición de complicaciones neurológicas en los niños que se sometieron a este tipo de trasplante en nuestro centro.

¿Estaba relacionado el tema de tu tesis con la investigación que realizas ahora?
No, aunque sí que estaba relacionado con la neuropediatría y con los cuidados neurocríticos.

¿Te costó llegar a ser médico?
Sí, porque la carrera de medicina, que es larga, no te forma como investigador. Entonces, después de la formación de médico y de pediatra, tienes que aprender este otro «trabajo» que es el de investigar.

¿Qué valores crees que se necesitan para ser médico y/o investigadora?
Lo más importante creo que es que te guste lo que haces, que encuentres un tema que te suscite interés, ya que vas a dedicar mucho de tu tiempo libre.

CAMINO PROFESIONAL

¿Fue fácil encontrar un puesto trabajo?
En mi caso sí porque me quedé en el mismo hospital donde me formé como pediatra. Pero no todo el mundo tiene esa suerte.

¿Qué es lo que más te gusta de tu trabajo?
Me gusta el trabajo asistencial, porque me gusta el trato directo con los pacientes y sus familias. Pero la investigación permite poner tu granito de arena en intentar mejorar algún aspecto del trabajo asistencial que quizás no está tan desarrollado.

¿Y lo que menos?
El tiempo que consume y lo poco que se valora en general, aún hoy en día. Es habitual que se dé por supuesto que tienes que dedicar tu tiempo libre a ello.

¿Cuánto tiempo llevas siendo médico?
Soy pediatra desde hace 14 años y neuropediatra desde hace 11.

¿Por qué investigas el síndrome de Dravet?
Me interesa especialmente la epilepsia infantil, y creo que falta mucho conocimiento acerca de las enfermedades minoritarias.

EL DÍA A DÍA EN INVESTIGACIÓN

¿Cuántos pacientes has visto o puedes llegar a ver en un turno?
En una mañana en consultas idealmente no debería ver más de 15 pacientes, aunque a veces llega a 20.

¿Se te hace difícil explicarle al paciente o a su familia la enfermedad que padece?
Creo que esto es algo que tampoco nos enseñan en la universidad; con el tiempo se hace algo más fácil, pero realmente es un momento duro. Sabes que vas a dar una noticia que les va a cambiar la vida y tienes que, por un lado, intentar arrojar esperanza, pero, por otro lado, ser sincera y no dar falsas esperanzas. Es difícil y tienes que adaptarte a cada familia, a sus expectativas y a sus conocimientos previos.

¿Ha cambiado mucho el diagnóstico para el síndrome de Dravet desde que empezaste?
Ha cambiado sobre todo la facilidad para conseguir el estudio genético, y esto hace que ante el menor signo sea más fácil solicitarlo y obtener el diagnóstico.

¿Cuál ha sido la experiencia médica más compleja que has vivido?
En mi caso son especialmente duras las malas noticias en la Unidad de Intensivos Pediátricos. A veces una enfermedad empieza de forma brusca, o bien sucede un accidente, o aparece una infección cerebral grave… Puede comprometer la vida del niño o dejar graves secuelas si sobrevive. Es un momento muy duro informar a la familia de una situación así.

¿A veces te sientes afectada por los casos de tus pacientes?
Intento desconectar al salir del trabajo, dedicarme a mi familia o a otras cosas, pero a veces es difícil. Hay pacientes que te marcan especialmente.

¿Has realizado o participado en alguna investigación en síndrome de Dravet?
Tenemos ahora pendiente de empezar un estudio sobre terapias no farmacológicas en el síndrome de Dravet que esperamos que podamos empezar este verano junto con la Fundación Síndrome de Dravet y otros investigadores. Y otros proyectos que veremos más adelante si llegan a ponerse en marcha…

¿Cuáles son los mejores hábitos personales cuando se cuida de un paciente con síndrome de Dravet?
Aunque debe ser difícil y a menudo falta el tiempo, sí que es importante que el cuidador se cuide a sí mismo, que tenga tiempo para él o para estar con amigos, pareja… Si no estás bien, no puedes cuidar bien.

SOCIEDAD E INVESTIGACIÓN

¿Cuál es la importancia de la investigación en la sociedad?
Es básico, porque ayuda a que la ciencia avance, y esto recientemente creo que se ha hecho muy evidente con la COVID. Pero aún está muy poco valorado el esfuerzo que supone dedicarse a la investigación, y los recursos son escasos.

¿Crees que es importante la investigación de enfermedades raras?
Creo que hay que dedicarle un esfuerzo especial, porque, al ser enfermedades poco frecuentes, son poco conocidas. Hace falta mayor formación de los profesionales implicados que es básico para que cada vez el diagnóstico de estas enfermedades sea más rápido y eficaz.

¿Cómo crees que la investigación del síndrome de Dravet puede influir en la sociedad en general?
Creo que la sociedad tiene que concienciarse más acerca de las enfermedades minoritarias y la discapacidad. Además, los avances en el síndrome de Dravet dan esperanza para otras enfermedades raras en las que la investigación hoy en día es aún más escasa.

¿Crees que es importante la labor de las organizaciones de pacientes?
Es fundamental, porque contribuyen a la concienciación social de la enfermedad, y facilitan la investigación y el conocimiento de la enfermedad.

PARA TERMINAR

¿Eres optimista en la lucha contra el síndrome de Dravet? ¿Por qué?
Creo que queda mucho por avanzar, pero soy optimista porque se están consiguiendo muchos avances en poco tiempo, por ejemplo, en el área de la terapia génica.

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TERMS & CONDITIONS

The Dravet Syndrome Conference 2023 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 Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 23rd of March 2023. 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 [email protected].

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 Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 23rd 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 [email protected] 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 [email protected] before 16th of March 2023. 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 [email protected]. 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 European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023 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 Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Friday 24th of March 2023. 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 [email protected].

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 Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 24th 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 [email protected] 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 [email protected] before 17th of March 2023. 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 [email protected]. 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 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 [email protected].

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 [email protected] 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 [email protected] 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 [email protected]. 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 [email protected].

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 [email protected] 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 [email protected] 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 [email protected]. 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.