A Personal Mission
Sarah Cohen Solomon, MD, assistant professor of pediatrics, is on a deeply personal mission. As a pediatrician specializing in Ehlers-Danlos syndrome (EDS) at UVA Health’s Ehlers-Danlos and Hypermobility Disorders Center—and as someone who lives with EDS herself—she has spent much of her life navigating the medical system and the complex challenges of the condition.
EDS is a group of genetic disorders that affect connective tissue throughout the body, causing symptoms that range from joint hypermobility and skin and vascular fragility to gastrointestinal problems, orthopedic injuries, cervical spine issues, mental health challenges, and heart disease. It’s not easily diagnosed.
When Dr. Cohen Solomon was growing up, her mother navigated a medical system for her that lacked an integrated program like the one UVA is building today. UVA’s care model brings together physicians and specialists in areas including genetics, physical therapy, and psychology, with additional disciplines involved according to each patient’s needs.
Dr. Cohen Solomon’s mother connected the pieces herself, trying to make sense of symptoms, appointments, and specialists while carrying the constant fear that she might be missing something important.
“She was exhausted and terrified all the time,” Dr. Cohen Solomon said. “All of those ‘what ifs’ weighed on her.”
That experience stayed with Dr. Cohen Solomon. It’s one that many people with EDS can relate to.
Years later, after spending years as a patient and making EDS connections of her own during medical school and beyond, she jumped at the opportunity to join UVA Health’s EDS Center—a place designed to bring together the many aspects of care that patients with EDS may need.
It’s also a place made possible by generous donors.
GENEROSITY WITH VISION
With the support of a generous gift and additional contributions, the UVA Health EDS Center opened in fall 2025 with more than 500 patients already on its waiting list. Today, that list is growing.
There are only about 15 treatment programs for EDS in the United States and approximately 18 worldwide. The Ehlers-Danlos Society, an international leader in EDS advocacy and research, recently named UVA as one of its CORE Network Center of Excellence Programs—a distinction that UVA gained within a year of opening. Of those, only five are at academic centers, and all are designed for consults only, not continued care. Designed to serve patients from Virginia and beyond, UVA’s model brings together physicians and specialists in areas including genetics, physical therapy, and psychology, with additional disciplines involved according to each patient’s needs.
“Philanthropy has been essential to turning our vision for the center into reality,” said Dacre Knight, MD, who previously served as medical director of the Ehlers-Danlos syndrome clinic at Mayo Clinic and now leads UVA Health’s EDS Center. “It has allowed us to build a multidisciplinary center where clinical care, patient support, research, and education grow together. We are so grateful for it.”
Ina Stephens, MD, a pediatric infectious diseases subspecialist, who specializes in EDS and integrative medicine, says the philanthropic commitment that helped launch the center was inspired by a grateful patient family, who believes a long-term, multidisciplinary approach is critical for improving the lives of patients with EDS.
“When you’ve watched patients spend years being told there’s nothing more that can be done, and then you see them regain function, return to school and work, those outcomes mean a great deal,” she said.
That initial gift made it possible to recruit the faculty needed to build the center, including Dr. Knight and Dr. Cohen Solomon.
Dr. Knight joined UVA Health in September 2025 to oversee care for adult patients. Dr. Stephens continues to lead EDS care for children. Dr. Cohen Solomon, who joined the center in April 2026, serves as its education lead.
“We couldn’t have done that without people who believed in the vision of this center,” said Dr. Stephens.
The center’s donors have formed a coalition to help sustain and grow the program. They are talking with other donors, sharing ideas, building momentum, and encouraging additional investment.
“IT TRULY IS EVERYTHING”
For Dr. Cohen Solomon, the appeal of UVA’s program isn’t simply that it brings more specialists together. It’s that the philosophy behind the program reflects the way she believes medicine should work.
She had long hoped to return to academic medicine, where she could combine clinical care with teaching and advocacy. When she met Dr. Knight and Dr. Stephens, she saw a shared vision.
One early decision particularly impressed her: Dr. Knight established a patient advisory group almost immediately.
“His first question was, ‘What do the patients need?’” Dr. Cohen Solomon recalled. “Everything else is gravy after that.”
The philosophy sounds simple: Listen first, then figure out what the patient needs. But for people who have spent years being shuffled among specialists, Dr. Cohen Solomon believes that approach can represent a profound change.
One reason she returned to academic medicine was to help develop educational programs for residents and, eventually, fellows. The goal isn’t simply to teach future doctors the facts about EDS. It’s to teach them how to approach patients whose conditions don’t have easy answers.
“Do they approach those situations with curiosity, or do they run away because it’s unfamiliar?” she said.
That question may ultimately be as important to the future of EDS care as any new diagnostic test or treatment. The clinic can see only so many patients at a time. But changing how physicians understand complex, multisystem conditions could affect many more.
Dr. Cohen Solomon knows that because she has experienced both sides of the equation. She knows what it is like to need a doctor who understands. She knows what it costs when no one seems able to connect the pieces. And she knows what she wants to build.
“Helping to build something that helps families avoid going through that experience is everything to me,” she said. “It truly is everything.”