top of page



This book is for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an underrecognized, complex, multisystemic disorder, with the silos of healthcare’s specialties often working against effective and efficient treatment. With 21 specialist & 6 resource chapters, Disjointed brings together physician, patient, and parent perspectives to support the goal of earlier and more complete intervention. With specialist chapters by: Paldeep Atwal, M.D., Richard Barnum, M.D., Linda Bluestein, M.D., Pradeep Chopra, M.D., Tania Dempsey, M.D., Shanda Dorff, M.D., Matthew Hamilton, M.D., Kristin Herman, M.D., Myles Koby, M.D., Petra Klinge, M.D., Anne Maitland, M.D., Andrew J. Maxwell, M.D., John Mitakides, D.D.S., Alan G. Pocinki, M.D., Lila Rosenthal, M.D., David Saperstein, M.D., Jill Schofield, M.D., Jordan Tishler, M.D. and more... 


Here are the links to the entire guide, which Dr. Dorff helped served as a medical reviewer.








In addition to expert knowledge from professionals like Dr. Dorff, they surveyed nearly 775 people diagnosed with EDS to get their experiences with diagnosis, treatment and living with the condition. 

bottom of page