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Category: Young Adults

Bonus Blog- The Young Chronicle: Ophelia

Published on December 1, 2017 under Guest Blogger for RSDSA
Written by Ashley Epping for the RSDSA blog. Ophelia is a 19-year-old who developed Complex Regional Pain Syndrome at only nine years old, is from Ontario Canada and uses the pronouns they/them/their. They were originally told by a doctor that they were only experiencing growing pains. They reflected on the experience saying “I always knew it was not growing pains because growing pains do not put you in a wheelchair”. Ophelia’s pain started in both knees and has now spread to their entire body. In 2013 they went into remission after a stay at the Children’s Hospital of Philadelphia in their chronic pain program; but the pain returned a year later and it came back full force. Currently Ophelia spends…
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CRPS Awareness Day 15: Young Chronicle Featuring Courtney

Published on November 15, 2017 under Stories of Hope
By Ashley Epping Courtney developed CRPS when she was 14 years old in her right foot; seven years later at age 21, she is now a pre-med student at Gordon College studying biology. Unusual circumstances happened between Courtney’s story and my own. Courtney and I went to elementary school together in 2006; I then changed school districts as we moved into middle school. Three years later, Courtney was diagnosed and informed that there was another young girl with CRPS in our city. Courtney and I were then reunited by CRPS and went on to connect our families, treatments and therapists. She was the first to enter the Chronic Pain Rehabilitation Program at Cleveland Clinic. My family and I traveled to…
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CRPS Awareness Day 8- The Young Chronicle with Vicky

Published on November 8, 2017 under Guest Blogger for RSDSA
By Ashley Epping The Young Chronicle is a new blog series started by Ashley to get insight on CRPS/RSD from young adults. Each blog will offer insight to the unique challenges that young adults with chronic pain face and their ways of coping, healing, and continuing on. Vicky is a 25 year-old from Illinois who was diagnosed with CRPS nine months ago. Her original injury was a trauma to her foot while playing soccer. As she started seeing doctors and making trips to the emergency room, her pain was dismissed as a bruised bone. Once she was accurately diagnosed with CRPS, the doctor said to her “If you don’t act on this fast, you will be disabled for the rest…
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CRPS Retreats and Gatherings- The Positive Impact of the YA Retreat

Published on August 29, 2017 under Events
By Guest Blogger Melissa Lanty RSDSA is focusing on how we can better serve the community, especially with November (CRPS Awareness Month) quickly approaching. One of our young adults contributed this blog shortly after our first young adult weekend, which was a great success. Read what Melissa has to say about how this weekend impacted her! Be sure to keep an eye on our events calendar for all things CRPS coming up! The first time I heard of CRPS/RSD was when my cousin, Ken, was finally given a diagnosis for the intense, burning pain he had been experiencing.  By the time the doctors figured out his diagnosis it already spread, jumped, and did all the horrible things this disease can…
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You Know You’re a Hospital Kid When… Life with CRPS

Published on March 14, 2017 under Guest Blogger for RSDSA
By Guest Blogger, Melissa Lovitz This piece about being a hospital kid, especially one with CRPS/RSD, was originally posted on The Mighty. When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome (or CRPS) landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count. When I was in high school, most of my inside jokes were with physicians who liked to dance every morning. I got…
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The Importance of People- Friends with CRPS

Published on January 24, 2017 under Call to Action
By Samantha Barrett, Special Events Coordinator I started my CRPS journey when I was a teenager. Of course, then, it was known as RSD, but a lot has changed over the years. I remember being diagnosed with “Reflex Sympathetic Dystrophy,” which instantly made me think that the doctor thought I was faking to get people’s sympathy. But, I soon found out it was so much more. Doctors didn’t give me much hope. They actually told me I would never walk again. But, I’ve always been a determined little monster. I did everything in my power to battle the beast that is CRPS/RSD. Physical therapy, acupuncture, medications, desensitization, and anything that was in experimental phases that I possibly could. But, there…
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Fear of Distance- RSD / CRPS and The Journey Away from Home

Published on December 6, 2016 under Guest Blogger for RSDSA
By Guest Blogger Rachel Ehrenberg Rachel is a member of the RSD / CRPS community that had the opportunity to be a part of DCP, or the Disney College Program. She details what it is like to be so far away from home, for the first time, with CRPS. 997.2 miles. 997.2 minutes. 16 hours. These are just numbers that form a distance to most people. But when you are living with a chronic illness, 997.2 miles is a long way from home and your comfort zone. That’s exactly what it was for me. In January, I packed up my things and moved from South Jersey to Orlando. I was beginning a journey of a lifetime and starting the Disney…
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