Síndromes de Fiebre Periódica:

Son enfermedades raras, es decir, afectan a menos de 5 de cada 10.000 personas. Suelen ser hereditarias y pueden deberse a una modificación de la composición genética (ADN) del sistema inmunitario innato no específico, lo que produce la activación del sistema, incluso cuando no hay invasores que combatir.

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Los especialistas dicen

Preguntamos a algunos especialistas su opinión sobre cómo identificar estos síntomas y consejos que se le pueda dar a los pacientes.

Estilo de vida

Vivir con una enfermedad autoinflamatoria rara puede ser una experiencia diferente para cada persona. 

Consulte los artículos sobre Viajes, Familia, Escuela y Usted.

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Más información:

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.