Vivir con un síndrome de fiebre periódica plantea muchos retos. A efectos prácticos y en el ámbito emocional, estas enfermedades pueden trastornar completamente la vida de las personas. No obstante, a medida que estas enfermedades se van conociendo mejor, las pruebas diagnósticas van mejorando y las personas afectadas reciben un mayor apoyo. Actualmente hay más esperanza que nunca para las personas con síndromes de fiebre periódica.
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.
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.
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.
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.