She is living with the rare disease Friedreich’s ataxia. Photograph: Dara Mac DónaillEmily Felix (28) has remained hopeful and “motivated” that one day a treatment would become available for the rare disease that has shaped her world. It is a rare, inherited and progressive neuromuscular disease. In February 2023, there was a breakthrough – the omaveloxolone drug Skyclarys was approved in the US and Europe followed in February 2024. Photograph: Dara Mac DónaillThose with FA can also have scoliosis, diabetes or heart conditions such as cardiomyopathy.

Source: The Irish Times March 31, 2026 15:36 UTC