DOCTORS w/ EDS Knowledge/ Experience in CT?

Looking for a list of ALL doctors in CT (or nearby) that have knowledge & EXPERIENCE with Ehlers Danlos Syndrome.

Any/ all areas of expertise, but especially Spine Specialist (Orthopaedic & Neuro Surgeons).

Have been to nearly every doctor possible in the State, but who knows, I may be missing the one that could provide the expertise I am desperately in need of. Would greatly appreciate any info someone could provide, first hand!

Am in an incredibly horrible situaiton w/ very severe case of Classic Type EDS w/ very rapidly progressive degenerative spine disease. Have been to UCONN Musculoskeletal Institute , Mayo Clinic (MN), and over 26 other private practice Spinal Surgeons & Neuro Surgeons in 2 out of 3 years I have been crippled by this condition, in addition to very severe EDS manifestations (incl. cross type symptoms) Unable to find ANY doctor willing to take an EDS patient w/ a complex medical Hx - so do not have ANY doctor, except pain management (for spine only = Rx morphine & corticosteriod spinal injections every 2 weeks!). Dx w/ emergency need for spinal surgery (namely full spinal fusion), but No doctor making Dx is willing to undertake due to EDS.

PLEASE PLEASE PLEASE, list any doctors you may have here, or email me directly?

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(Originally diagnosed w/ EDS (Types I, II, III) in 1979
Dr. Alfred Bollet (ret.), Chief Rheumatology, Danbury Hospital, CT
Re-confirmed diagnosis w/ EDS Classic (severe) 2007
Dr. Petros Tsipouras, Head/ Dept. Human Genetics, UCONN Musculoskeletal Institute, Farmington CT - also medical member/ participant involved in the official re-classification & Dx of EDS (most recent vs.), Versailles France)

So I am not in need of a geneticist.