Mithi’s story
Mithi first experienced scleroderma symptoms when she was 17, which included leg pain and skin tightness. She did not initially see a doctor as the symptoms would come and go.
Dawn’s story
Dawn was diagnosed with scleroderma in 2008. She got an epilepsy diagnosis in February 2007 and because of the red spots (telangiectasia) on her body she was referred to dermatology.
Beth’s story
Beth’s diagnosis journey was a long and frustrating one. It took around five years from when new symptoms started showing up to when she finally received a proper diagnosis.
Tamikea’s story
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.
Maxine’s story
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’s story
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’s story
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.
Edward’s story
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’s story
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 story
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’s story
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’s story
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.