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, smiling and sleeping. Yet, the painful illness was mistakenly considered to be psychological by many doctors. 80 health professionals couldn’t help her. Four life-threatening surgeries and hundreds of special treatments for her condition lay behind her. Over 45 medical journeys led her halfway around the world to many international therapy faculties.

While writing was the only way to express herself for years, she carried pen and paper everywhere she went. 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, as she was concerned by the hopelessness of other patients. She finally dared to overcome her withdrawal, in order to start a public awareness campaign. Without being able to speak, she became a voice for many people suffering in silence.

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

Nora lives and writes in Vienna, in the Woods and mostly in the waiting rooms of hospitals.

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