About the Study

Pediatric Joint Hypermobility and Ehlers Danlos Syndrome: Patient quality of life and symptoms survey

This study is for children: • 5-22 years of age • Patient must have Pediatric Joint Hypermobility or Ehlers Danlos Syndrome • Patient must be seen in the EDS clinic at Children's Mercy or the Rheumatology clinic with Dr. Jones This study is being done to understand what other conditions are commonly seen in patients who have Pediatric Joint Hypermobility or Ehlers Danlos Syndrome. Surveys are sent to families asking about patient pain levels, quality of life, fatigue, and gastrointestinal symptoms. The study team will also review the patient's chart to see what other diagnoses are affecting the patient alongside joint hypermobility and Ehlers Danlos.

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Full Study Name: Natural History of Ehlers Danlos Syndrome