A 25-year-old music production student from Brighton, who once impressed friends with 'cool party tricks' such as dislocating her joints and stretching her skin, now faces severe health challenges. Lavender Blackthorne has been diagnosed with Ehlers-Danlos syndrome (EDS), a rare inherited condition affecting connective tissue, which has left her unable to speak for more than a few minutes without her mouth bleeding.
Lavender first noticed symptoms at age six when her joints began popping out of their sockets and she could stretch her skin up to 10cm. By 12, she bruised easily, and by 14, her legs had become 'twisted', with simple movements causing dislocations. Heart palpitations led doctors to ban her from exercise beyond walking. Despite suspected EDS, a formal diagnosis was delayed until she was 21.
Alongside EDS, Lavender was diagnosed with an unspecified autoimmune condition, causing her immune system to attack her own body. She also suffers from extreme fatigue, swelling, skin rashes, and mouth bleeding after speaking. At 19, she dropped out of university because picking up a hammer dislocated her wrist.
Lavender told PA Real Life: 'I did become quite suicidal at a few points... I thought I’d never be able to have those things [a relationship and family].' She recalled being bullied at school for being different. Despite her struggles, she continues her studies in music production and hopes to raise awareness of her condition.
