Nora Sophie Aigner is a word lover and inclusion advocate for chronically ill/disabled people. At age 21 she got afflicted by an ultra rare disease called “Eagle-Syndrome” over night, which only concerns 0,16% of the entire global population. It caused extreme pain, a long-term voice loss and severe problems during swallowing, eating, nodding and smiling. Yet, the painful illness was mistakenly considered to be psychological by many doctors. 40 health professionals couldn’t help her. After two life-threatening surgeries Nora went abroad to receive special treatments for her condition. Over 45 medical journeys led her halfway around the world to dozens of international therapy faculties from Arizona to Italy, Germany, Netherlands, Switzerland and Spain – next to the Camino of Santiago Trail. She spent many lonely nights in hotel rooms of foreign cities.

While writing was the only way to express herself for years, she carried pen and paper everywhere she went. One night of a full moon she discovered her passion for writing poems. When back in her home country Austria, she wrote the first scientific thesis about social aspects of her uncommon illness at the University of Vienna. She was very concerned by the hopelessness of other patients. So after a long period of hiding, she finally dared to overcome her withdrawal, in order to start a public awareness campaign and search for an effective cure. Without being able to speak, she became the voice for many people suffering in silence.

She graduated with distinction in French and Psychology/Philosophy at the University of Vienna and became a journalist for an inclusion magazine. Her limited speech function reminds her of the importance of words. Since then, she encourages people to use their voices and tell their stories. But above all: to believe in their dreams.

Nora lives and writes in Vienna, in the Woods and mostly in the car on the way to her therapies.

Watch Nora’s search for a cure.
Celebreties lent her their voices.