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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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From One Family to Another- A Pediatric CRPS Journey

Published on December 20, 2016 under Guest Blogger for RSDSA
By Guest Bloggers Bobby and Lauren Gellert The Gellert's daughter, Zoe, has faced CRPS head on. She has been inspired to do some great things. See what Zoe and the Gellert family are doing and what they learned about pediatric CRPS. “Dad!  You need to come home.  The doctor said nothing is broken or torn, but I still can’t put my foot on the floor.  It feels like someone is sticking a knife through my heel and it’s burning inside”. These were the words of our 11-year-old daughter, Zoe Gellert, who the day before was involved in a crush injury to her right ankle. Zoe was immediately non-weight bearing and was describing pain symptoms that made no sense based on…
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Being Told to Keep My CRPS Quiet

Published on August 23, 2016 under Bully Free Zone
=== By Samantha Barrett Sometimes, people can be downright mean. When awareness is a crucial part of living with CRPS/RSD, what do you do when someone tells you that you should keep quiet about it? I’ve had CRPS for just about 10 years now. I was diagnosed as a pediatric patient. Being a teenager, I got easily irritated when people didn’t know what CRPS/RSD was or why I was still on crutches. People wrote posts on MySpace about me, calling me a faker. I lost a lot of friends because they didn’t understand why I couldn’t go to the movies or have sleepovers. To say I was angry would be an understatement. But I didn’t want to let that anger…
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Living Beyond Your Illness- Getting By With CRPS

Published on March 1, 2016 under Guest Blogger for RSDSA
By Guest Blogger Suzanne Stewart. Originally Featured on her Tears of Truth blog. Hello Luvs, IF you haven’t read any of my blog before, you won’t know that I always start out my blog with “Hello Luvs”.  I had meant to write this long ago, but time gets away from all of us, so today the phone was on mute and the kitty was lying in her spot with me in the same room and it seemed a good time to write about this.  We can all get down and sad sometimes, even depressed.  I mean, having a chronic illness, or a list of chronic pain illnesses can get pretty monotonous to say the least! If you let yourself get…
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An Update on the Walk to Conquer Pain

Published on November 10, 2015 under Events
  By Samantha Barrett: The Walk to Conquer Pain kicked off this past Saturday. It grew even more over the weekend. I love seeing how much this walk grows every day. I wanted to just clarify a few things for everyone. Since this is a new website and event, I am learning as we go as well. To sign up for the walk you can go to: https://walk-to-conquer-pain.everydayhero.com/us/get-started. This will create your fundraising page that you can share online through email or social media. All you have to do is copy the web address at the top of the page. It is similar to a FirstGiving page. If you would like a template of an email/post to send to your…
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