We are incredibly grateful to everyone who has shared their personal stories of living with Raynaud's and scleroderma to help us to raise awareness, share experiences and give hope to others.
It all began when Tamikea went to A&E with severe chest pains and the doctors discovered she had pericarditis which they suggested was a result of Covid. But Tamikea was not convinced.
Once an enthusiastic walker who regularly exercised and was completely independent, Maxine’s diagnosis of Raynaud's and scleroderma has left her unable to work and in need of a carer.
Debbie first experienced Raynaud's as a teenager but her concerns were dismissed. It wasn't until years later that she was formally diagnosed by a sympathetic GP.
Helen was diagnosed with Raynaud’s and limited systemic limited sclerosis just before the pandemic. She has also tested positive for the antibody for the more severe type of scleroderma.
Following skin changes to his forehead aged around two, it took four years for Edward to be formally diagnosed with Parry Romberg syndrome and scleroderma en coup de sabre.
Matilda, lives with scleroderma en coup de sabre. This is a form of localised scleroderma that mainly affects the skin and appears as a long, narrow line across the scalp and temple.
Claire’s scleroderma has become progressively worse since her diagnosis, meaning she cannot work or do simple things like she used to, as she has lost mobility in her hands, fingers and lips.
Ruth was in her thirties when she had to give up a senior management role due to her complex set of conditions associated with scleroderma that left her without stamina and energy.
Scott takes 250 cancer tablets a week but it's not cancer. His diffuse cutaneous systemic sclerosis has caused significant fibrosis of his lungs and he relies oxygen tanks to breathe.
Amanda was diagnosed with scleroderma and Raynaud’s in 2015. Years earlier, she thought something was wrong and the doctor told her “you’re getting old, so get used to it".
Sharing your story is one of the most impactful ways to make a real difference. Your experiences, challenges, and triumphs can inspire others across our community, showing them they’re not alone and that hope is possible