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Category: Youth

This will be used for both children and young adults with CRPS/RSD. These can be stories of hope, fundraising stories, interesting finds, etc.

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, 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 the…
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Feeling Good (Again) at CCK’s Pain Week

Published on August 2, 2016 under Youth
  By Sammie Barrett Last year, you may recall that I had my very first camp experience at the Center for Courageous Kids in Scottsville, Kentucky. I liked it so much that I went back to represent RSDSA again this year! If you thought the inaugural year was amazing, wait until you hear about this year. Thank you to The Coalition Against Pediatric Pain for allowing me to tag along with you. Another thank you to the US Pain Foundation and Rock Out to Knock Out RSD for co-sponsoring this camp, too! Last year, we had about 19 children total, which was a great first year! This year, we had 49 children total and then parents/guardians. We completely filled the…
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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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5 Do’s and Don’ts When It Comes to People with CRPS

Published on March 8, 2016 under Guest Blogger for RSDSA
By Guest Blogger Anna Evenosky   So often we find ourselves in situations where people are trying their best to help us when in reality they very well may be hurting us. I can see how being a loved one of someone with CRPS can be challenging in more ways than one. You may find yourself not knowing what we want from you. I hope these 5 Do's and Don't give you more insight as to how you can help and comfort us.   DO: Ask us how we are doing. Our CRPS is something that is always on our mind and we appreciate knowing that somebody is thinking about us. You don't need to worry about bringing up a…
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RSDSA Spotlight: How CRPS Taught Me to Live In the Moment

Published on February 9, 2016 under Guest Blogger for RSDSA
By Anna Evenosky, Guest Blogger Rewind to that time that is so vague in my head that I can barely remember it. The time of my life when I was as free as a bird spreading its wings for the first time. The time of my life when I didn’t know CRPS existed. I can’t recall what being pain free feels like. Although, I can recall the happy times I would be lying if I said I didn’t miss. Going from a life where my biggest worries were passing a class, or getting something done on time, to a life of chronic illness, was an adjustment to say the least. Something I wasn’t exactly ready to take on. Although, I’m…
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Crazy Sock Walk Raises Awareness for CRPS/RSD and More

Published on January 26, 2016 under Events
By Samantha Barrett, Special Events Coordinator For the past few years, I have participated in Crazy Sock Day. I am a lover of crazy socks and have quite an inventory of them, so every day is Crazy Sock Day for me, but on January 24 it is embraced by the invisible illness community. I had heard it was for a young girl named Melanie who had several of the invisible illnesses that I did. As the years went by, I learned more about this young lady’s story. January 24 is her “painiversary.” To raise awareness and bring a little bit of sunshine to this girl’s life, Crazy Sock Day was started. It quickly took the CRPS Community by storm through…
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Crazy Sock Day for CRPS Awareness

Published on January 19, 2016 under Events
Interview by Sammie Barrett, RSDSA Special Events Coordinator. For the past six years, there has been a day in which people wore crazy socks to raise awareness for CRPS/RSD awareness. I heard about it in its second year and encouraged my friends and family to participate. We would post pictures of our crazy socks online to our personal Facebook pages and to a page dedicated to this Crazy Sock Day. Last year, the first Crazy Sock Walk happened in Melbourne, Florida. It is happening again this year. The masterminds behind this: the Dickens family. Melanie is teenager living with CRPS/RSD among other invisible illnesses. Her mother, Laurie, is one of her biggest advocates. I was able to interview them this…
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How Camp Is Changing Lives For All Ages

Published on December 1, 2015 under Guest Blogger for RSDSA
By Candice Clifford. Volunteer from the Center for Courageous Kids Pediatric Pain Camp Session. CRPS Warrior. Experiences which leave an impression on your heart are the ones that stay with you forever… I ventured to Kentucky this past July to volunteer at the Center for Courageous Kids’ (CCK) inaugural Pediatric Pain Camp.  I took a solo trip, not knowing what to expect but ready to have fun with the campers.  To many, Kentucky seemed like a random place for this east coast girl to be traveling to.  However, as I reflect back on my experience at CCK, there was nothing random about this trip, rather I’d like to believe it was serendipitous. Working with children who live with chronic pain…
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CCK- We Feel So Good: A Reflection of Our Experience at the Center for Courageous Kids in Scottsville, Kentucky

Published on July 21, 2015 under Pediatric Pain Camp
By Samantha Barrett, RSDSA's Special Events Coordinator I have a confession to make- I have never been to summer camp. Or, at least I hadn’t experienced camp until this past week when I went to the Center for Courageous Kids, where there was a week for pediatric pain. This was made possible by a collaboration between The Coalition Against Pediatric Pain, RSDSA, U.S. Pain Foundation, Rock Out to Knock Out RSD, and of course The Center for Courageous Kids. It is amazing what we can do when we all work together. I was able to adventure to Kentucky to represent RSDSA at this camp and had some fun of my own! The children and their families were able to partake…
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Learn More About the Camp for Courageous Kids

Published on April 2, 2015 under Bully Free Zone
Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It's your first day of summer camp and you are so excited to be there, to join in all the activities: archery, bowling, arts & crafts, horseback riding, etc. Fast forward 25 years to being a mom and/or dad whose child who lives in chronic pain - there are no summer camps for your child because he/she is "too complex." But now there is a summer camp for children living in chronic pain: The Center for Courageous Kids in Scottsville, Kentucky. RSDSA, together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP), is sponsoring a camp July 14-17,…
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