A student whose 'cool party tricks' of dislocating joints, contortion, and stretching skin turned out to be symptoms of a rare condition now faces severe limitations, including an inability to speak for more than a few minutes without her mouth bleeding.
Lavender Blackthorne, a 25-year-old music production student from Brighton, first noticed something was wrong at age six when her joints began popping out of sockets. She could stretch her skin up to 10 centimetres outward, initially viewing these as unique abilities.
By 12, she bruised easily, and by 14, her legs became 'twisted.' Simple movements caused dislocations, and severe heart palpitations led doctors to restrict her to walking only. At 21, she was officially diagnosed with Ehlers-Danlos syndrome (EDS), a rare inherited connective tissue disorder. She also has an unidentified autoimmune condition causing her immune system to attack her body.
Ms Blackthorne experiences extreme fatigue, swelling, skin rashes, and mouth bleeding after speaking. She told PA Real Life: 'I did become quite suicidal at a few points, just because sometimes I’d be bedbound for a week or so.'
As a child, she was 'really good at running fast' until a fall at six dislocated her ankle. She could pinch and pull her skin up to 10 centimetres. 'I noticed I could do some really cool party tricks, like extreme flexibility, moving my body in weird ways, joints coming out of sockets,' she said.
By 12, she was diagnosed with severe anaemia. At secondary school, small movements caused joint dislocations. 'If I twisted my hips or raised my arms, the skin around it would tear,' she said. At 14, she was diagnosed with moderate mitral regurgitation, a heart valve condition linked to suspected EDS.
Around the same time, a rheumatologist said she had an autoimmune condition that 'lies dormant.' Her symptoms continued, and she was formally diagnosed with EDS at 21, though the specific type remains unknown.
At 19, she enrolled in university to study metalwork but dropped out because picking up a hammer dislocated her wrist. According to the NHS, EDS is a group of 13 inherited conditions affecting connective tissue, with no specific treatment but manageable symptoms.
Ms Blackthorne is now fundraising for private tests, believing she may have additional autoimmune conditions. She struggles with breathing and hopes to identify the cause. 'I feel quite depressed and nervous because I don’t know how my body will be on any given day,' she said.
She returned to university in 2023 to study music production at WaterBear Brighton, and her mental health has improved. 'I want others to know it gets better too!' she said.
