Meet Rachel Lee

Rachel Lee is an EDS patient herself with autoimmune complications and many of the other comorbidities that we experience. She first learned about Ehlers-Danlos Syndrome while living in Cairo, Egypt when heat and diet caused the most significant and dangerous flare of her life to date. Living overseas with her husband and two children, it became apparent that there were no facilities to adequately care for mounting symptoms, and doctors immediately advised their return to the United States.  They landed back in North Carolina in September of 2018 to begin a new journey for her and both of her children.

By the spring of 2019, thanks to rigorous research and advocacy, Rachel was diagnosed 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 them, even those she no longer needs, and will always be grateful to Dr. Alan Spanos, who remains in touch as a friend and supporter of her advocacy efforts for patients and physicians. 

In June of 2021, Rachel underwent a life changing surgery that corrected a childhood abnormality in her spine called Occult Tethered Cord. This surgery and specialized fascial mobility movement training and massage, freed her body to make new steps in recovery and long term health. A few months later, she began advocating for EDS patients professionally in addition to constant volunteer efforts. 

Research into this common but widely underrecognized and misdiagnosed condition is advancing and changing constantly. Rachel uses her diverse background in education and academia to help make new information accessible to the community through social media and this website.  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 is loyal, compassionate and highly knowledgable in her areas of expertise. She is a former dance educator with physiotherapy training and performance background of over ten years. She holds two bachelor’s degrees, one in early childhood education with specialties in one-room school education and early literacy.  She also completed a master’s degree in January of 2020, and continues to participate in research in non-verbal communication, cognative and psycholinguistics, and all things neuroscience.

Rachel homeschools both of her children and serves as their full-time medical advocate for EDS and Autism. In her free time she continues her post-graduate research in cognitive archeology, linguists and non-verbal communication, and how these subjects integrate with pedagogy, specifically an understanding of how the developing brain-body builds meaning for communication. She uses this work to advocate for better treatment and education methods for special needs children and children with sensory dysfunctions.

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.