The Invisible Pain – Ehlers Danlos Sydrome
Many people are living with chronic pain from a number of disorders. The INvisible project is focusing on awareness of chronic pain including Ehlers-Danlos Syndrome.
“In 2009, photographer and Ehlers-Danlos Syndrome survivor, Syd London, had an idea for a photo documentary that she entitled, INvisible Project. It was her vision to bring public visibility to the experiences and strengths of those living with pain. This project compares the fragility of the physical body with the resilience of the spirit that holds onto hope, by highlighting the day-to-day experiences of 15 chronic pain survivors through photographs. With support from the CT Pain Foundation, Syd London followed each person for one day, capturing the struggles and triumphs of the pain survivors, including Hillsborough resident and business owner Stephen G. Brilliant.
“For 12 years I have lived with a chronic neurological pain condition in my left ankle known as Reflex Sympathetic Dystrophy Syndrome or Complex Regional Pain Syndrome (RSDS or CRPS),” Brilliant said. “Whether it’s running my business, cutting the grass, coaching my kids or traveling with my family, the pain is always there—but most people just think I don’t like to wear shoes.”Brilliant knows he is not alone: Nearly 75 million Americans deal with pain. Chronic pain is an all-encompassing problem that knows no boundaries in regards to age, sex or race. The same is true with RSDS/CRPS a painful and incurable neurological syndrome, which can be triggered by even the smallest incident.
The Invisible Project allows the outside world a glimpse of what it is like to live with pain while persistently pursuing to live a meaningful life. The goal of this project is to create chronic pain awareness, empower survivors and generate change. All proceeds of the event will go to help those suffering with chronic pain.
Brilliant is one of the 15 INvisible Project participants whose photographs will be on display at a month-long showing at the Bridgewater Library opening Sept. 3.
To reflect the widespread effects of pain, a variety of conditions are being represented, including RSDS/CRPS, cancer, Ehlers-Danlos syndrome, juvenile arthritis, Living with RSDS Inc.—of which Brilliant is one the board of directors—is a local nonprofit organization offering monthly support group meetings at Somerset Medical Center and will be one of the exhibitors at the NYC event.
“For as long as RSDS has been a part of my life, I have been a part of Living with RSDS,” he said. “It is important to me to listen and help others face the daily challenges RSDS brings to them, their families and friends.”
A Sept. 10 reception has been planned, co-sponsored by the Bridgewater Library and Living With RSDS, will include refreshments; an art project for children coping with chronic pain in any way organized by local youths; education and awareness information; a short presentation by a medical professional about chronic pain as well as guests including Brilliant, US Pain founder Paul Gileno, and some of the local members of Living with RSDS, as well as other persons dealing with chronic pain and members of the medical community.”
This is a much needed activity to promote Chronic pain awareness in NYC.
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