Shining a spotlight on Primary Ciliary Dyskinesia: A rare disease that affects 1 in 7,500 people in the UK.
Rare Disease Day, observed every February, brings people from all over the world together to raise awareness about the impact of rare diseases on individuals and families.
This year, PCD Support UK is aiming to raise awareness about Primary Ciliary Dyskinesia, a rare disorder affecting the tiny, hair-like structures (cilia) that line the airways. This disease affects roughly one out of every 7,500 people. PCD may impact the lungs, nose, sinuses, ears, and fertility.
PCD Support UK is the UK’s dedicated charity supporting those affected by PCD, championing vital research into this rare disease since it was formed over 30 years ago. They are a vital resource for patients, families, friends and carers of those impacted by PCD.
Working with medical resources around the world, they are supporting important medical progress in finding a cure for the condition that affects people of all ages. PCD Support UK is ran entirely by volunteers, and is a mix of PCD patients and family members.
Michelle Robinson, aged 34, was diagnosed with Primary Ciliary Dyskinesia at the age of 21 and is under the care of Belfast City Hospital, but with no specific PCD clinic available, it’s all down to careful management.
“Living with Primary Ciliary Dyskinesia is like navigating a world where everyone else has a perfectly tuned engine, while mine sputters and stalls. It's a constant uphill battle against infections, breathing difficulties, and the ever-present threat of complications. But it's also about resilience, finding joy in the small victories, and advocating for yourself and others with this often-overlooked condition."
PCD Support UK advocates for patients, while providing information and funding for research. While every patient is different, the objective is ensuring no-one feels alone with their condition.
From hosting online get togethers, to medical conferences that help doctors, nurses and physios get together to learn about new therapies, medication and opportunities, PCD Support UK is there for patients and their families.If you would like to know more information Primary Ciliary Dyskinesia or PCD Support UK, please reach out to [email protected] or visit www.pcdsupport.org.uk