Living with Multi-Generational Ehlers-Danlos Syndrome

Kenneth’s family has a multi-generational history with Ehlers-Danlos syndrome (EDS). Family members with the disease include his mother, uncle, grandmother and great grandmother. Kenneth was diagnosed at just 2 years old while being examined for a knee injury. A trauma caused massive swelling in his knee, producing a hematoma the Read more…

Living with Stickler Syndrome, RLS, Blindness and More

Lily is a grad student researching human development and culture, focusing on how cultural mindsets around disability impact infrastructure. She was born with a rare connective tissue disease called Stickler Syndrome, which is likely the root cause of a constellation of health challenges she has faced throughout life. In second Read more…

Living with Two Invisible Conditions: Hypermobile Ehlers-Danlos (HEDS) and Autism

Brandy grew up knowing she was different. She struggled both socially and physically, having problems picking up social cues while constantly experiencing injuries and joint dislocations. When seeking help she was disbelieved, shrugged off, or accused of drug seeking behavior. Brandy tried to push through and be strong, but her Read more…

Living with Chronic Migraines, Ehlers-Danlos Syndrome and More

India is a retired nurse living with a complicated collection of health conditions. She was born with hypermobile Ehlers-Danlos syndrome that went undiagnosed most of her life, and has experienced several related comorbidities including bronchiectasis. Her pain situation reached a fever pitch due to a Chiari malformation, where part of Read more…