Enniskillen

My name is Roisin after a lifetime of mislabeling by the NHS, I was officially diagnosed with EDS in 2025, with co-morbid neuromuscular phenotypes.

I’m a mother of 4 girls with complex health conditions ranging from, ASD, ADHD, Growth Hormone Deficiency, Sensory paraplegia, Stickler Syndrome, hereditary pancreatitis and cone-rod Dystrophies.

Fighting inequalities within the NHS has become my life, during difficulty days I cling to my favourite quote which gives me hope – ‘Never give up, for that is just the place and time that the tide will turn.’ ~ Harriet Beecher Stowe.”