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Living with RSD (Reflex Sympathetic Dystrophy) Guest: Carol Levy

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Carol Jay Levy, B.A., CH.t author A PAINED LIFE, a chronic pain journey founder, Women In Pain Awareness website, http://womeninpainawareness.ning.com/ founder, Women In Pain Awareness Group, Facebook http://www.facebook.com/?ref=home#!/group.php?gid=111961795481256 member, cofounder with Linda Misek-Falkoff, PWPI, Persons With Pain International, accredited to the U.N. Convention on the Rights of Persons with Disabilities member U.N. NGO group, Persons With Disabilities Carol been disabled by, trigeminal neuralgia since I was 23. She has a degree (B.A.) in psychology but always wanted to be an actress/singer. After doing a little work locally in Pa I moved to NYC to pursue my dream. I was there for six months when one minute I was taking classes, auditioning, or working to make money to do that, and the next I was disabled. The pain struck out of the blue, as trigeminal neuralgia, or tic doloreaux, can. One 20 second period of spontaneous horrendous pain turned into total disability within 2 weeks. As a result I was virtually housebound for 10 years, the pain being 'triggered' by anything, even something as light as a tiny breeze or someone passing by too closely. I have the typical story of searching for the right treatment/surgery and have, all told, undergone 12 brain surgeries, including 2 implants. I am currently with my third, an experimental brain implant, which I believe does help. In 2003 I published my book, A PAINED LIFE, a chronic pain journey. I was also lucky enough to get involved with the UN NGO (non governmental organization) on the Treaty For The Protection or Rights and Dignity of Persons with Disabilties. Through my connection with Dr. Linda Misek Falkoff and due mostly to her work the treaty includes invisible disabilities, including chronic pain. Dr. Misek Falkoff and I also started PWPI (persons in pain international), an online group created for advocacy and support for persons in pain.

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