What is rare in rare? #5 Spanish Association for GSD patients (AEEG)
Rare diseases affect millions of people worldwide, yet each experience is profoundly unique. Beyond the medical definitions, rare diseases reshape childhood, family and daily lives.
The three words shared by the Spanish Association for GSD patients (AEEG) to define “rare” not just as a medical term, but also to emphasise the uniqueness of a living experience are:
Special. Challenging. Resilience
Special: children with a rare disease are special. They develop very quickly a sense of responsibility as if shaped by the instinct to navigate complex realities.
Challenging: living with a rare disease makes everything more demanding, complicated and heavy. The fact that most of the times it is chronic makes it difficult to accept. And the risk of life-risking emergencies is frequently present.
Resilience: Rare disease patients and families always bounce back and move ahead. There are very dark times, ups and downs, but they go through them, with strength and dignity.
