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.