Ellen Lenox Smith

Ellen Smith


Mrs. Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island. Featured in local and national press accounts, Mrs. Smith brings a reasoned and compassionate perspective to the need for safe patient access to medicine.  Mrs. Smith has been featured in the NY Times, Washington Post,  NPRI local and national, the front page of the Providence Journal twice, TV interviews, and Podcasts. 

Mrs. Smith has enjoyed a long and distinguished career, predominantly in the field of education. The last position she had before needing to resign, due to health, was teaching Middle School Social Studies. She last taught eighth grade Social Studies at Burrillville Middle School, retiring after 23 years of teaching. Mrs. Smith holds a Bachelor of Science degree in Elementary Education from Springfield College with over twenty-nine graduate credits.

Mrs. Smith suffers from two rare conditions. One is a degenerative collagen disorder called Ehlers-Danlos syndrome. This crippling disease allows her joints to become easily subluxed, causing vice-like pain and confining her on and off to a wheelchair. In 2006, she was accepted into the Connective Tissue Research at the National Institutes of Health to help search a cure for Ehlers-Danlos syndrome. Her second condition is called sarcoidosis, which causes enlarged lymph nodes and granulomas in her lungs. Both these conditions are currently not curable. She presently has endured twenty-three surgeries and countless visits to her doctors.

Presently, Mrs. Smith is on the board and a Rhode Island ambassador for the US Pain Foundation along with being a co-director for Cannabis Advocacy. She is also on the board for the Rhode Island Patient Advocacy Coalition (RIPAC) as media coordinator. She has been appointed by the governor to the ATEL Program (Adaptive Telephone Equipment Loan Program), and also helps with media exposure for the five-year-old EDS RI Support group, responsible in part for bringing in speakers to educate the group. She is a staff writer for the Pain News Network 1000 Watts and with her husband, speaks out to educate others about her condition and pain management. Ellen was also just recently appointed to the Rhode Island Advisory Board, representing patients, to oversee the compassion centers.  Mrs. Smith has spoken on numerous occasions, including yearly at Brown University for their medical students, BCBSRI Nurse Case Managers, Physical Therapy Students in RI and CT, along with speaking at the EDS National Conference, and at the FDA. Mrs. Smith is also the author of two books: It Hurts Like Hell!: I Live With Pain—And Have A Good Life Anyway and My Life as a Service Dog.

Mrs. Smith is a resident on a small farm in Scituate, Rhode Island with her husband, Stuart (and her service dog Maggie). Ellen and Stuart have been married for 42 years! They are proud parents of four adult children and three grandsons, with another grandchild on the way. Ellen is also an organic gardener, and prior to her disability was a master swimmer and high school swim coach.