Introducing Alanna, a Changemaker from Westmeath who is turning her rare disease into a platform for awareness and understanding. Alanna was diagnosed with Koolen de Vries syndrome at 10 and a half, a genetic condition caused by a deletion on chromosome 17 that results in learning disabilities and low muscle tone.

Despite these challenges, Alanna leads a vibrant life, working as a hotel receptionist and attending St Hilda's day centre for adults with intellectual disabilities. She cherishes her two dogs, adores Disney movies, and is a fan of musicals.

Alanna eagerly joined the 'I Am Number 17' campaign to share her story, raise awareness about rare diseases, and advocate for better patient support during diagnosis. She hopes her participation will educate the public and healthcare professionals about the unseen struggles of living with a rare disease and inspire others in similar situations.

In Alanna's words, people with rare diseases are "the same as other people, we just need a bit of extra help".

Alanna describes her experience of living with a rare disease as "Awesome", "Special", "Unique", and "Proud.

Photography by Julien Behal