'Living with a rare disease like Hurler syndrome hasn't held me back - it's given me the best life'

"One in every 17 people has a rare disease - I'm one of those people. I have mucopolysaccharidosis type I. It's more commonly known as 'Hurler syndrome', but even when I use that term, no one I meet has ever heard of it."

"Hurler syndrome wasn't named after Ireland's greatest game, unfortunately. It was named after the German doctor who discovered it in 1919, Dr Gertrud Hurler."

Emma Ward has mucopolysaccharidosis type I, commonly known as Hurler syndrome, a rare disease affecting one in every 17 people. Despite its prevalence, few people are familiar with the condition. The syndrome is named after Dr. Gertrud Hurler, who discovered it in 1919. Ward's experiences with this condition have profoundly shaped her identity as a disabled Irish Traveller, highlighting the challenges and misunderstandings faced by those with rare diseases.

Read at Independent