Prof. Leslie Russek

Clarkson University Professor Emeritus Leslie Russek recently hosted the first ECHO telementoring program in North America for allied health professionals who want to learn more about managing patients with Ehlers-Danlos Syndrome.

Russek had about 30 participants from across the country join her program who came from a variety of allied health professions, including physical therapy, but also occupational therapy, speech therapy, psychology, and medicine.

According to The Ehlers-Danlos Society website, the Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

Project ECHO is a healthcare initiative that aims to address population health in a callable way by using a hub-and-spoke knowledge-sharing network, led by expert specialist teams who provide telementoring and collaborative care.

“I presented for about 20 minutes, then we had a good discussion for about 30 minutes, where many people contributed questions and suggestions. Then I presented a case study of a patient I am treating, with questions for the group, tapping into the communal knowledge of a multidisciplinary team,” Russek said. “The motto of the program is ‘All Teach, All Learn’ to emphasize that we all can learn from one another. Although I am an 'expert' in Ehlers-Danlos Syndrome, I still learned really valuable information from other participants.”

Russek also presents at national conferences several times a year as one of the only Physical Therapy experts on Ehlers-Danlos Syndrome. She has presented at The Ehlers-Danlos Society Global Learning Conference for patients and their families to learn from experts when they might have had trouble finding knowledgeable providers where they live and has also lectured at Medical Providers Day for health professionals.

Russek will host a session every three weeks, facilitating eight sessions in all.