Herramienta educativa «Vivir con fiebre recurrente»

Los síndromes de fiebre recurrente hereditarios son un grupo de enfermedades genéticas raras que pertenecen a la familia de las enfermedades autoinflamatorias y afectan a todos los aspectos de la vida de los pacientes y sus familias. Por su carácter hereditario, la mayoría de estos trastornos aparecen en una fase temprana y son enfermedades crónicas. Pueden afectar a todos los aspectos de la vida diaria, como la educación, así como a los aspectos sociales y emocionales, y requieren cambios en el estilo de vida tanto para los niños como para sus familias.

Obtenga más información sobre los síndromes de fiebre recurrente y busque ayuda si conoce a alguien con un síndrome de fiebre recurrente mediante el siguiente folleto.

 

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What are the difficulties of living with SJIA ?

The challenges of living with SJIA are many, and not simply physical. Not being able to do many of the simple, everyday things people take for granted, the disease takes an emotional and mental toll on everyone affected by SJIA – parents and family, as well as the child dealing with this autoinflammatory condition themselves.

How can you manage the effects of SJIA on your family?

In this video, Dr. Eugen Feist, a rheumatologist at the Charité University Hospital in Berlin, explains the effect that disease management and contact with patient advocacy groups (PAGs) can have on the life of a child and their family affected by SJIA.

What experiences do families dealing with SJIA go through?

Watch the video below for expert insights from Professor Alberto Martini (University of Genoa, Italy) and Mr Gabriele Bona (AMRI Association based in Genoa, Italy) on the experience of people who are living with SJIA.

Real life stories from people with rare disease 

Living with a rare autoinflammatory disease is different from one person to the next. Watch this series of videos below to find out how patients and their families share their experiences of living with SJIA, FMF and other autoinflammatory conditions.

Click here  to learn more from the experiences of others diagnosed with SJIA and a guide to what it means to live with a rare periodic fever syndrome like SJIA.

If your child is displaying any of the symptoms of SJIA, it is important you speak to your doctor as soon as possible and obtain an accurate diagnosis. Click here  for guidance on finding a specialist pediatric doctor and what you need to know to prepare for your first appointment with an SJIA expert.