Ciara

Ciara

Meet Ciara, from Clare. Ciara lives with Ehlers Danlos Syndrome (EDS) – a rare condition that affects collagen, the 'glue' holding the body together. She is a passionate advocate for EDS and rare diseases.

Ciara’s journey with EDS began when she was 12, after a minor car accident led to symptoms of pain and fatigue that never went away. These symptoms became so severe Ciara had to drop out of school. Ciara was officially diagnosed with EDS at 15 and her mother Anne was diagnosed with the genetic condition not long after. EDS affects all organs and has brought along various other conditions for Ciara such as Mast Cell syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), gastroparesis, reflux disorder, Von Willebrand Disorder.

Despite the challenges that come with these conditions, Ciara has a variety of interests and passions. She is a qualified nail technician and an arts enthusiast who enjoys photo editing, painting, reading, and writing short stories. Her interests extend to video-editing, and she loves creating TikTok videos and putting pictures to music. She also has a keen interest in forensics and crime. Her pets, baking, and her skills in nail art bring her joy. Ciara also advocates for and supports young people living with EDS through TikTok and Instagram, in particular emphasising the importance of mental health and the need to unmask the pain often hidden behind smiles.

Ciara describes her experience of living with a rare disease as isolating, frightening, challenging, enlightening.

Photography by Julien Behal

Ciara
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