EDS Awareness “Speaker Series” – Ellen Lenox Smith – RECORDING AVAILABLE
Ellen Lenox Smith’s January 2014 presentation recording and additional resources are provided below.
“EDS Awareness Speaker Series” – a webinar program hosted by EDSawareness.com
EDS Awareness hosts FREE online learning sessions twice/month! In this ongoing series, medical topics are presented to patients within the context of Ehlers-Danlos Syndrome and associated health conditions.
January 8, 2014 PRESENTER: Ellen Lenox Smith RI Arthritis Foundation Ambassador and RI US Pain Foundation Ambassador
TOPIC: “Taking control of Life with EDS; Steps on how to help yourself”
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Ellen Lenox Smith has emerged as a leading voice for patients in living with pain in her state of Rhode Island and across the country. Featured in local and national press accounts, Mrs. Smith brings a reasoned and compassionate perspective to the need for safe patient access to medicine and timely, accurate care. She has been featured in such places as the NY Times, NPR Radio, Washington Post, Pain Pathways and Arthritis Today Magazines and presented a workshop at the EDS conference this past summer of 2013.
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 dislocated, causing vice-like pain and confining her on and off to a wheelchair. She presently has endured twenty-two surgeries and countless visits to her doctors. Her second condition is called sarcoidosis, which has allowed enlarged lymph nodes and granulomas in her lungs. Both these conditions are presently not curable.
Mrs. Smith has enjoyed a long and distinguished career, predominantly in the field of education. She taught social studies from 1989-2007. Mrs. Smith holds a Bachelor of Science degree in Elementary Education from Springfield College and a middle school endorsement to teach SS and Science.
Married to her husband for over 40 years, Mrs. Smith has devoted much of her recent time to advocacy. She is a Rhode Island ambassador for both the US Pain Foundation and Arthritis Foundation, on the board of the Rhode Island Patient Advocacy Coalition (RIPAC), Appointed by the governor to the ATEL Program, (Adaptive Telephone Equipment Loan Program) and a volunteer for Marriage Equality Rhode Island. In 2006, she was accepted into the Connective Tissue Research at the National Institute of Health to help search for a cure to Ehlers-Danlos Syndrome.
A proud mother of four adult children and two grandsons, Mrs. Smith is also an organic gardener, and prior to her disability was a master swimmer and high school swim coach. A member of the Bell Street Chapel Unitarian Church, Mrs. Smith is a resident of Scituate, Rhode Island.