“Having suffered my whole life with EDS, I was finally diagnosed by Dr. Clair Francomano in Baltimore, when I was 49. She noted that I also had Tethered Cord Syndrome, Arnold Chiari Malformation 0, and sent me to Dr. Fraser Henderson who de-tethered my spinal cord the next year. Of course the list of co-morbidities keeps getting longer and longer as science becomes better at noting and tracking them, starting with ME/CFIDS; Mast Cell Activation Disorder; Fibromyalgia; Neurally Mediated Hypotension; regurgitation of mitral, tricuspid and aortic valves; awful headaches, issues with my entire GI system; major issues with bladder and reproductive systems and incredible muscle knots that strike the back of the scapulars, shoulders, neck, spinal support muscles, periformis muscles, hands, feet, forearms, legs and ankles. In 2017, when the new nosology changes came out, my EDS diagnosis was changed from Classic and Vascular to Musculo-Contractural EDS, which includes lots of additional issues and explained the club feet I was born with. One of my latest issues during the past year has caused me to experience incredible pain after sitting for only 10-15 minutes, with the pain spreading from L4-5 across my lower back, into the left hip and down the left leg, causing issues with my left foot. Because of the pain caused from sitting up, I was in bed 85% of the time.
“Then my neighbor, Sheryl Mckanas came up with a new type of kinesiology tape, which marries the joint holding ability of regular kinesiology tape with the added technology of Far-Infrared Heat and Ions after 4 years of dedicated research and development. She has named it THRIVE FAR-INFRARED KINESIOLOGY TAPE, and it will be coming out on the US market in September. She saw me limping back in March, taped me with one of her sample rolls, and the results were mind blowing for me. First I thought it was just the placebo effect, then, as I continued to work with the roll she gave me, I started to realize that it was actually getting rid of the lower back pain complex, as well as the incorrigible muscle knots and pains all over the rest of my body.
“I went back to her, explained EDS and the other things that go along with it, and told her that although I’ve been disabled for the past 11 years, I wanted to help her as a consultant to get this product out to the EDS Community, as I know it can help others like me. We gave it to Dr. Francomano, and she loves it. She’s using it on her patients and will be bringing it to her new post at U of Indiana in the fall. We gave it to Jon Rodis, who runs the New England Regional EDS Group, who many of you know, and it helped him so much that he invited Sheryl to present and tape people at his June 9th meeting. The response was amazing and Sheryl received many beautiful testimonials. With the success of Thrive Tape with so many EDS’ers, I asked Sheryl if she would be willing to bring Physical Therapists to this year’s EDS National Conference in Nashville, so that other EDS sufferers could be taped and hopefully enjoy similar results to what I have experienced. To my joy and astonishment, Sheryl decided to make Thrive Tape a Gold Sponsor at the upcoming EDS convention in Nashville this July. In addition, she has invited me to attend (my first time!). Being able to sit long enough to flying to Nashville is something that is only made possible by my wearing Sheryl’s tape. The last time I flew was up to D.C. to be operated on by Dr. Henderson in 2010! I look so forward to meeting the 800 registrants and to seeing for myself, the reactions of those being taped. My hope is that this will be the start of a new beginning for many of us.”