Meet Anne, from Clare, mother to Ciara who is another one of our Changemakers. Anne lives with Ehlers Danlos Syndrome (EDS) – a rare condition that affects collagen, the 'glue' holding the body together.

Anne’s health journey has been a challenging one and she only received her EDS diagnosis a number of years after it was discovered that her daughter, Ciara, had the genetic condition. Prior to Ciara’s diagnosis, Anne worked in consulting and programme management for 20+ years, but she had to leave this career behind when her daughter’s health suddenly declined in 2013. Anne is in a unique position given she has the perspective of being both a carer and a patient.

As a result of her experiences, Anne has risen to become a strong advocate for EDS and rare diseases. She is a board member of Rare Ireland and Rare Diseases Ireland and is Chair of Irish EDS, a support and advocacy group (affiliated with the international Ehlers Danlos Society), which provides support for individuals and families affected by EDS and its comorbidities. Anne is also actively involved in various forums raising awareness about EDS outside of Ireland, in Europe and the UK.

Anne’s advocacy work aims to change perceptions around rare diseases, emphasising that patients' lived experiences are invaluable for understanding the needs of the rare community. She promotes greater awareness about invisible conditions/disabilities. Many rare conditions/disabilities are not visible. Through her advocacy work she encourages healthcare professionals to listen more to their patients, be compassionate and collaborate for better treatment strategies.

Anne describes her experience of living with a rare disease as hopeful, isolating, proud and challenging.

Photography by Julien Behal