EDS Awareness is the primary initiative of Chronic Pain Partners, a patient-led nonprofit and a trusted voice in the Ehlers-Danlos community since 2011. Our mission is not only to raise awareness of Ehlers-Danlos Syndromes, but to support patients in navigating life after diagnosis.

Through our articles, newsletters, multimedia, and community storytelling, we help patients, medical professionals, and the broader community better understand EDS and its wide variety of comorbid conditions. By translating emerging research and connecting patients with experts, we turn complex medical information into clear, actionable knowledge that patients can use. We also offer practical guidance for everyday life with EDS, from addressing medical trauma to identifying the best supportive tools. 

John Ferman and his daughter Deanna witnessed firsthand the significant gaps in support, resources, and medical awareness surrounding Ehlers-Danlos Syndromes (EDS). Driven to change this reality for others, John and Deanna founded EDS Awareness in 2011. Behind their mission, however, is a deeply personal story.

For over four decades, John’s wife and Deanna’s mother, Carol, lived with severe pain and other debilitating symptoms that were repeatedly misunderstood and dismissed by medical professionals. At times, her symptoms were misattributed to psychological causes. This clinical oversight led to inappropriate hospitalization and treatment in a psychiatric facility, resulting in significant medical trauma. During her time there, Carol was prescribed a medication that was later included in a class action lawsuit due to its association with an increased risk of breast cancer. Tragically, Carol passed away in 2008 at age 63, following a five-year battle with this form of cancer. 

As they entered their 20s, John and Carol’s daughters began experiencing many of the same symptoms their mother had endured. At age 36, Deanna, was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS). While Carol unfortunately never knew the true cause of her lifelong symptoms, this diagnosis finally put a name to a condition that had shaped their family’s lives for decades. 

While John sadly passed away in 2025, EDS Awareness continues to carry forward his legacy under Deanna’s leadership. Carol’s experience serves as the catalyst for our mission, illustrating the devastating toll that insufficient medical awareness, misdiagnosis, and systemic dismissal can have on a patient’s life. At EDS Awareness, we serve as a trusted educational resource for medical professionals, and we stand up for and alongside patients like Carol, providing the validation, education, and support they deserve, both before and after diagnosis.