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The Reason We Walk at the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo

Published on June 12, 2019 under RSDS General Info
Written by Debbie ONeal for the RSDSA blog. When you are diagnosed with CRPS, which is ranked as the most painful chronic pain condition known to man, you wonder why more doctors are not aware of what it is or how to treat it. You wonder why there is not more research being conducted and why there is not a specific treatment to help control the pain, especially since CRPS was first seen and diagnosed during the American Civil War. How can we rectify this? How can we help make a difference?  My co-chairs, Beth Seickel, Stacey Udell, and I had the idea to bring together those who have been diagnosed with CRPS and the medical community through a walk…
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Meet our Team: Jim Broatch

Published on June 11, 2019 under RSDS General Info
This summer, we're taking the time to introduce the RSDSA team to our Warriors and their families so you can know the names and faces behind our organization. What is your name and title? I'm Jim Broatch and I'm the Executive Vice President and Director of RSDSA. How long have you been with RSDSA? I’ve worked for RSDSA for 20 years, first in Haddonfield, NJ and then when it relocated in Milford, Connecticut. I moved the office to my hometown when Roe and Frank Davis, two of the RSDSA founders retired. Each day, I walk to work with Murphy my beautiful and loving golden retriever. What is your favorite part about working with RSDSA? That each day, I’m given the…
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CRPS, a New Four-Letter Word from Hell

Published on June 5, 2019 under RSDS General Info
Written by James Doulgeris for the RSDSA blog. August 30, 2018 is the first time I ever heard the letters CRPS, and they are four letters I can assure you that you will never want to hear preceded by “You have …” as I did. This is not my story, but one about the challenges of sufferers of little understood orphan diseases told by a healthcare professional. CRPS stands for Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, or, RSD. There is another, more sinister, name for it, “The Suicide Disease.” I’ll get to why shortly. It's now ten months later and I push through day by day. In my work as a healthcare executive and now life…
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The Light Side of Pain

Published on May 29, 2019 under RSDS General Info
Written by Maria Martinez for the RSDSA blog. I am 50 years old and have been married 30 years.  I have a beautiful 27-year-old daughter and a 25-year-old son. They both decided to get married within 6 weeks of each other last year. One gave us a months’ notice and the other 2 days. As a wife and mother, I could not be happier about their choice of spouses. I adore my husband and had so many plans for this time in my life. All those plans were waylaid in 2008 after a cervical mitre.  The neurosurgeon explained that my neck is literally not put together correctly and that these issues were inevitable. The major nerve bundle going to my…
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An Interview with Ride For Warriors’ Eric Moyal

Published on May 22, 2019 under RSDS General Info
Written by Lauren Bentley for the RSDSA blog. As the editor of the RSDSA Newsletter, there are many aspects of the job that I love such as reading about the latest research studies, promoting community awareness events, learning about alternative methods for coping with pain; but perhaps my favorite part is making connections with other members of the RSDSA community and listening to their stories. I recently had the privilege to interview Eric Moyal, an energetic, enthusiastic young adult who recently earned his masters’ degree and works in fundraising for Brandeis University. He is also the brother of a CRPS Warrior. Throughout our conversation, there seemed to be one theme that prevailed above everything else: Eric really loves his sister…
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CDC Issues Clarification of Guidelines for Prescribing Opioids for Chronic Pain

Published on May 15, 2019 under RSDS General Info
Written by James W. Broatch, MSW, RSDSA Executive Vice President, Director Three years after the Centers for Disease Control and Prevention (CDC) released its Guidelines for Prescribing Opioids for Chronic Pain, which was intended for primary care providers (PCPs), three of the authors recently wrote an article in the April 24th issue of the New England Journal of Medicine acknowledging untoward consequences related to the misapplication of the Guidelines. For the past three years, RSDSA's staff, Board of Directors and I have struggled to help individuals with Complex Regional Pain Syndrome (CRPS) and other chronic pain syndromes deal with the misapplication of the Guidelines. Individuals on long-standing high-dose opioid therapy, who reported being abandoned by their PCPs or pain specialists,…
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Those Who Say It Cannot Be Done Should Get out of the Way of Those Who Are Doing It

Published on May 8, 2019 under RSDS General Info
Written by Wendy Kahn, MD for the RSDSA blog. I’ve always been very active, at least until one day in the fall of 2000, when I got a stick stuck in my rollerblade when I stood up to start my ride. I decided to have a controlled fall, but the impact on my sacrum turned out to be anything but controlled. During the next three years, I developed multiple cases of pneumonia, until the fifth pulmonologist figured out that I had twisted my spine, kinking one lung. In 2003, a nerve in my left calf became painful, limiting my walking.  My twisting deformity increased steadily until 2005 when suddenly I had such excruciating pain in my legs - first left,…
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A Patient’s Experience Inside the Neurologic Relief Center in Fayetteville, AR

Published on May 1, 2019 under RSDS General Info
Written by Angie Jones for the RSDSA blog. Four years ago, I was happy, healthy and pain-free. I owned my own business, volunteered in dog rescue, traveled with my family, and enjoyed my life. I had driven three hours to Kansas City and was standing in line when my blood pressure tanked causing me to collapse, spiral downward and was left with an ankle that required reconstruction. Within days my casted foot had swollen, turned dark purple and felt as if it was on fire. The pain was incredible. Nothing helped. Ice, pain meds, elevation… there was no relief. Although I shared my concerns with my doctors, they failed to recognize the symptoms of Complex Regional Pain Syndrome (CRPS). When treated…
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Baby Steps

Published on April 24, 2019 under RSDS General Info
Written by Tatum Bunnett for the RSDSA blog. “Baby steps” has been my motto for half of my life. At the age of nine, I started experiencing intense pain in my feet and lower legs. My doctor discovered that I had a congenital birth disorder in which several of my bones in my feet and ankles were fused together. First, a series of casts were used to non-surgically correct the problem; I spent 12 weeks of my fifth-grade year in a wheelchair with casts on both legs. Unfortunately, as a result of this treatment, I developed Complex Regional Pain Syndrome (CRPS). It was then determined that I needed a series of surgeries to correct the original foot deformity, but my CRPS…
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Introducing Jeri Krassner RSDSA’s Special Events Coordinator

Published on April 10, 2019 under RSDS General Info
So, who am I, Jeri Krassner, formerly an NYC gal working for New York City Hemophilia Chapter, now Special Events Coordinator for RSDSA. I work for Jim and you. And I am a fundraiser and that means I ask people for money, which is hard, but there are two things to remember that make it easy. You are not asking for yourself. You are not asking your family, friends, neighbors and community to help pay your VISA bill or make a car payment. You are asking people to give because you are passionate about the cause, it’s important to you and giving = doing good. I say when someone gives me any amount from $2,500 to $10 Thank You –…
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