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, nurses and PA’s whose invaluable expertise, curiosity and skill shaped her standard for what “duty of care” should be. 

Serving You: One of the features that makes Rachel a unique advocate is her identity as an Autistic woman. When working with a client, Rachel uses her lifetime of verbal and non-verbal communication analysis to truly learn how her clients communicate. Knowing how each unique client expresses themselves helps Rachel walk them step by step through appointments, reducing anxiety and increasing outcomes, and building relationships with providers that are truly effective. She is also a certified teacher with the Foundation for Movement Intelligence as a Bones For Life (R)  instructor. 

EDS Specialty: 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 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.

I will always be grateful to Dr. Alan Spanos, who remains in touch as a dear friend and supporter of advocacy efforts for patients with hypermobile spectrum disorders. Thank you for choosing us as your second career.

Disclaimer: The information contained on this site and the supporting attachments provided by Rachel Lee Patient Advocacy Consulting are for educational purposes only. Although we have performed extensive research regarding medical conditions, treatments, diagnoses, protocols and medical research, the staff of Rachel Lee Health Advocacy is not a licensed members of the North Carolina Medical Board or any clinical affiliates including but not limited to the NC Board of Physical Therapy Examiners, the NC board of Licensed Professional Counselors, or the NC board of Dietetics/Nutrition. Information provided by members of Rachel Lee Health Advocacy should not be considered a substitute for the advice of a licensed medical doctor, counselor, therapist or other licensed clinical practitioner in handling your medical affairs.