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Rare Disease Day 2017: A Rare Game for the CRPS/RSD Community

Published on February 28, 2017 under Events
Today is February 28. It is Rare Disease Day!  This is a wonderful day for educating people about rare diseases and conditions, including Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD). This blog is a little different than what we typically do. We want to help educate people about CRPS/RSD, while helping people find different resources on our website! What could be better than to organize a scavenger hunt?! You will have until Sunday, March 5, 2017 at 11:59 p.m. EDT to complete this scavenger hunt and email your responses to SBarrett@rsds.org. People with 100% correct responses will be entered to win an RSDSA travel mug. The winner will be chosen via a random selection tool online and will be announced…
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New Year, New RSDSA Goals – Helping the CRPS Community

Published on January 3, 2017 under Call to Action
 By Samantha Barrett, Special Events Coordinator Welcome, 2017! So many of us were ready for a new year. With the new year comes expectations of resolutions, bettering oneself, and change overall. Not only is RSDSA no different than everyone else, but we also want to help people reach their goals/resolutions and then some! As you may have seen in our emails, we have a set of initiatives for 2017 here at RSDSA. They include: Co-sponsoring Camp for Courageous Kids- a camp for youngsters in pain for our third year Continuing to transform lives with our "Treating the Whole Person Conferences," the next one is scheduled for Nashville in April 2017, as well as utilizing our live-stream Implementing our first statewide…
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Longest Day Golf Recap: How It’s Helping RSDSA

Published on September 28, 2016 under Events
By Samantha Barrett RSDSA's very first Longest Day of Golf took place this week. On Monday, September 26, RSDSA was lucky enough to take part in a golf marathon and Innis Arden Golf Club. We had Zach Baron, from Arccos, golfing on our behalf with the support of Jim Broatch. Also at the marathon were fifteen other golfers representing Malta House and the Susan Flynn Oncology Nursing Foundation. Golfers took to the golf course trying to complete as many holes of golf as possible to raise money for the charities they were representing. Prior to the event, which we deemed our very first Longest Day of Golf event, we collected donations. Some people submitted pledges on a per-hole basis. For…
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Long Island and CRPS- RSDSA’s New Walk

Published on August 16, 2016 under Events
By Samantha Barrett, Special Events Coordinator There is a new event coming to the RSDSA community. I have been particularly excited about it since I’ve been working with the three wonderful women from the walk committee for months now. Millie, Debbie, and Beth all live with CRPS. They hadn’t known each other very well until this walk started to get planned. These three women have been working day in and day out to ensure that the Long Island CRPS/RSD Awareness Walk is a success. Every two weeks, we have a giant conference call and I get to hear about everything they have planned for September 10, 2016 in Eisenhower Park. It is an event not to be missed. Because I…
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Manual Ligament Therapy (MLT) and RSD/CRPS

Published on July 26, 2016 under Guest Blogger for RSDSA
By Arik Warren Gohl LMT, MMLT   Part 1- A Short History of Manual Ligament Therapy (MLT) In 2003 when I first began creating Manual Ligament Therapy (MLT), it was for this simple but important reason… Something different had to be done in the approach of helping those with pain. In those days as a medical manual therapist working in a Physical Therapy clinic, I became frustrated with the amount of time it was taking for people to heal while getting multiple therapies such as PT, Chiropractic, Massage , and anti-inflammatory injections. Inspired by an old chiropractic technique called the “Logan Basic” that a good friend, a Chiropractor named Dr. John Mishko had shown me, I decided to do something…
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RSDSA’s Final Achilles- Our Swan Song

Published on June 29, 2016 under Events
By Samantha Barrett, Special Events Coordinator This past weekend, RSDSA participated in their final Achilles Walk. We have been doing the Achilles Walk as an organization for over a decade. The event has run its course. We have decided we need to move on and change things up a bit for the CRPS/RSD community. For me personally, this was my third Achilles Walk. I attended my first Achilles when I started interning for RSDSA. That first year was absolutely beautiful. It was my first time staying in New York and seeing Central Park. I met so many people and made so many lifelong friends. It was amazing to me that, after 8 years with CRPS/RSD, I was still learning so…
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CRPS Wedding Chronicles: The Dress

Published on May 24, 2016 under Stories of Hope
By Samantha Barrett, Special Events Coordinator Wedding Dress Shopping with CRPS It’s been a bit since I wrote about wedding planning with CRPS. But let me tell you, a lot has been going on behind the scenes. You think that starting to plan almost two years in advance would be enough, but obstacles do come up. If you want to read about the proposal, click here. If you want to read about how I picked my venue, click here. Before we delve into wedding dress shopping, I wanted to say something. Just because you have CRPS or your significant other has CRPS doesn’t mean you can’t get married and live out your fairy tale. CRPS is a challenge, I would…
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The True Definition of a CRPS “Warrior”

Published on May 17, 2016 under Guest Blogger for RSDSA
  By Anna Evenosky, Frequent Contributor What is the true definition of a CRPS Warrior? We refer to ourselves all the time as “CRPS Warriors.” Although, what does it truly mean to be a warrior? Warrior is defined as, a brave or experienced soldier or fighter. So yes, we do fit under this definition considering every day we have no choice but to fight. We fight to keep our function and fight to keep our spirits bright and alive. Recently, I have had endless things go wrong for me. On top of Complex Regional Pain Syndrome (CRPS), I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), my depression came on full force, and my anxiety on how I will go…
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But I Still Look Fine- Living with Chronic Pain/CRPS

Published on May 10, 2016 under Guest Blogger for RSDSA
By Guest Blogger Tara White, RN, (Disabled)   I used to be a very active woman. I proudly served as a corpsman in the United States Navy for five years. I went to Nursing School and loved working in Obstetrics for twenty years. I climbed the difficult back of Half Dome in Yosemite National Park twice, and felt alive while cycling many hundreds of miles a year. I loved training with weights, power walking, skiing, kayaking, yoga, and many other outdoor activities.   Like many other women, I made a very poor choice of a first husband, though got a wonderful daughter out of the deal. Raising her by myself with microscopic child support but tremendous family support, I’ve watched…
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My Journey Back to Health: Barbara Wall and RSD

Published on May 3, 2016 under Guest Blogger for RSDSA
    By Guest Blogger Barbara Wall, Power Over Pain of Arkansas (Note: This is a success story from someone with RSD/CRPS that saw  Dr. Katinka van der Merwe. To read our article on Dr. Katinka van der Merwe's approach, click here). I was living life and enjoying all things around me. I did not feel that I took much of anything for granted. In 2005, I suffered a severe injury to my cervical spine (broken neck) as well as other injuries. As if dealing with a broken neck was not enough I received the diagnosis of Reflex Sympathetic Dystrophy (RSD), today known as Complex Regional Pain Syndrome (CRPS). I had the opportunity to practice as a registered nurse for twenty…
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