Are Scoliosis, Kyphosis and EDS Connected? Billie’s Twisty Tale

In 5th grade Billie's classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person's spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was bent 53 degrees on top and 38 degrees on bottom and she also developed kyphosis, an excessive rounding of the upper back. These two conditions were so severe that Billie's internal organs were being crushed, forcing her diaphragm upwards into her rib cage and compressing her heart. She was in constant pain and began struggling to breathe. In this episode of the Major Pain podcast Billie (known online as BillieBillieB AKA 'The Pyrex Lady') talks us through her history with scoliosis and kyphosis, including a posterior spinal fusion at 17 years old. Two nine inch rods and 14 screws were surgically installed to straighten her spine, eliminating the kyphosis and improving her spinal curvature from 53 and 38 to 17 and 11. She went under anesthesia at the height of 4'10" and woke up 5'1". Standing up after surgery was the first time in her whole life that she stood eye to eye with her mother. Billie discusses the possibility that her scoliosis may be co-morbid with a connective tissue disease called Ehlers-Danlos syndrome. She has always been hypermobile and extremely flexible, and has begun to wonder if a connective tissue disease could explain why her spine developed with such extreme curves. Now that she has undergone spinal fusion, she remains extra flexible everywhere except her spine. Moving forward she will continue to pursue answers regarding EDS, hoping to piece together an inclusive picture of her health journey. Connect with Billie online: https://billiebillieb.carrd.co/ PlayWatch the episode on YouTube, or listen on all major podcasting platforms.