- Joubert Syndrome
- Interviews
Chamier's interview
How did all start?
Perdí la capacidad de correr, saltar, comencé a perder balance…
Do you already have a diagnosis? How long did it take you to get it?
Alrededor de 4-5 años.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Básicamente neurología.
What has been the most useful thing for you so far?
No perder de vista que es mejor que me ocurra a mí, y no a otros.
Sacar fuerzas donde ya no hay.
What have been your biggest difficulties?
La discriminación por ignorancia; las personas creen que ando borracho. Por lo tanto, no empatizan.
How has your social and family environment reacted? Have your social or family relationships changed?
Al principio solamente.
What things have you stopped doing?
Deportes, paseos, viajes, natación, trabajo, cocinar, entre otros.
What do you think about the future?
Realmente no pienso mucho en eso.
So far, which years have been the best years in your life? What have you done during them?
Los años en que fui productivo.
What would you like to do if you didn’t have your condition?
Viajar. Sobre todo el contacto con la naturaleza. Y trabajar como lo hacía.
If you had to describe your life in a sentence, what would it be?
Lucha diaria.
Finally, what advice would you give to a person in a similar situation?
Tomarlo con calma, buscar y aceptar el apoyo familiar de todo tipo; y no flaquear, luchar cada día contra la depresión.
