Student's Party Tricks Reveal Rare Genetic Disorder

At 25, music production student Lavender Blackthorne navigates life with Ehlers-Danlos syndrome (EDS), a rare inherited connective tissue disorder. Initially manifesting at age six with joint dislocations and skin that stretched up to 10cm, her condition progressed, leading to easy bruising and heart palpitations by her mid-teens. Doctors formally diagnosed EDS at 21, by which time Blackthorne also experienced severe fatigue, swelling, skin rashes, and mouth bleeding after short periods of speaking.

Her health struggles significantly impacted her mental well-being and life aspirations, causing periods of suicidal thoughts due to pain and the perceived loss of dreams like relationships and family. An autoimmune condition, yet unidentified, further complicates her health. Doctors have banned her from exercise beyond walking due to a heart condition, mitral regurgitation, diagnosed at 14.

Blackthorne is now fundraising for private medical tests to identify potential additional autoimmune conditions, aiming to find appropriate treatments for her breathing difficulties and overall well-being. Despite ongoing challenges, she returned to university in 2023, finding that pursuing her studies has improved her mental health and encourages her to share her story openly.