Meet Rachel Lee

Rachel Lee is an EDS patient herself with autoimmune complications and many of the other comorbidities that EDS patience experience, some common some rare. She was finally diagnosed in spring of 2019 with hypermobile Ehlers-Danlos Syndrome, and began building a team of professional medical providers who could treat her co-conditions. She is still friends with many of these wonderful doctors, even those she no longer sees, they are some of the first recommendations for many clients. Knowing how they communicate and their process for treatment, Rachel helps walk clients through appointments step by step, reducing anxiety and increasing outcomes for many. 

Research into this common but widely underrecognized and misdiagnosed condition is advancing and changing constantly. Rachel uses her diverse background as an early literacy and special needs educator, and academic research in cognitive linguistics and communication, to help make new information accessible to the community and relevant to her clients needs. Also an EDS mom, Rachel is no stranger to everything from phantom leg pains to the painful hospitalization and investigations of pediatric medicine. She loves to serve and support other parents on this journey in the way that she herself longed to have support.

Rachel lives in Charlotte, North Carolina with her husband, two children, and their dog Ellie who supports them all. She enjoys kayaking, card games, ice skating, teaching any chance she gets, and taking continuing ed courses in linguistics and clinical medicine. In 2023, she began working with local and distant providers to launch the Umi Wellness Center; an initiative to expand the scope of patient advocacy consulting, and make resources more available for individuals living with complex, multisystem diseases and disorders, and their families and loved ones.

She will always be grateful to Dr. Alan Spanos, who remains in touch as a friend and supporter of advocacy efforts for patients with hypermobile spectrum disorders.