Lucy

Lucy

Meet Lucy, originally from the UK and now living in Mayo. Lucy is a student with a passion for landscape photography, cooking, baking, and fashion. She lives with Cystinosis, a rare metabolic disorder, but refuses to let it define her life. She enjoys being outside and walking in nature, although her condition sometimes impacts her energy levels and how far she can walk.

Diagnosed at just eight months old, Lucy's journey with Cystinosis has been challenging. The condition causes fatigue, chronic pain, and various health issues, including weak swallowing muscles and muscle wastage. She is also prone to catching a lot of illnesses and suffers from anxiety around her health.

Lucy's involvement in the campaign stems from her desire to educate people about Cystinosis and other rare diseases. She hopes her story will resonate with others living with a rare disease, making them feel less alone in their struggles. She also hopes her participation will encourage the general public and healthcare professionals to learn more about rare diseases, leading to better support and treatment for those affected. As she describes it, “we are still people, we just experience life a little differently.”

In Lucy's own words, her experience of living with a rare disease can be described as "Fragile", "Brave", "Strong", and "Resilient".

Photography by Julien Behal

Lucy
C-ANPROM/IE/RDG/0018

This is a non-promotional campaign to raise awareness of rare diseases in Ireland. This campaign is initiated and funded by Takeda