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.
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 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 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.
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.
Ellen discovered she had Raynaud’s during university when exam stress triggered Raynaud’s attacks. She has had to work on her mindset, to try and keep her body from attacking itself.
Simi was diagnosed with Raynaud’s when she moved to the U.K. She has since created her own business, SnugToes, providing heatable slippers for the Raynaud’s community.
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.
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