This presentation will discuss how hEDS presents in pediatric patients, which is different from how patients present as adults. Dr. Elias will discuss some of the new genetic and medical issues involved in diagnosing hEDS.
I am a pediatric specialist board certified in Clinical Genetics and Neurodevelopmental Disabilities. I have directed the Special Care Clinic at Children’s Hospital Colorado since 2000, which is the largest clinic of its kind in the US, where children with medical complexity receive both primary care as well as coordinated, consultative care for their genetic/medical /developmental disorders.
For many years I have been caring for patients with Ehlers-Danlos syndrome, a group of 14 connective tissue disorders which can be associated with complex medical symptoms. With support from donors in the community, and the Dean of the University of Colorado School of Medicine, a new Ehlers-Danlos Syndrome (EDS) Center of Excellence was established in November 2019, with the aim of providing comprehensive care for children and young adults with EDS. The Center will couple the efforts of a multidisciplinary clinical team at Children’s Hospital Colorado, and adult specialists at the University of Colorado Hospital.
I have more than 35 years of clinical experience caring for children with medical complexity and developmental disabilities. I am very active in the American Academy of Pediatrics and have served as an elected member of the Committee on Children with Disabilities of the American Academy of Pediatrics from 2003-2010, and the Sub-Committee on Autism from 2010-2017. I have published clinical reports on many topics related to children with medical complexity in the journal Pediatrics as well as other pediatric and genetic journals. I am a Full Professor with Tenure at the University of Colorado School of Medicine.