fbpx
Donate
Advocacy
Events
Blog
JOIN
STORE

Shelter Me From The Rain

Published on June 16, 2021 under RSDS General Info
Written by Erica Santiago. Reposted with permission for the RSDSA blog. Back in November 2012, I was on my way to a doctors appointment out in Boston Massachusetts. I was hit on the left side of my car by a very large tractor trailer truck during a merge in the road. I did not know at the time that this accident was going to be the changing point in my life. The condition I developed from this accident made everything different and quickly, seemingly overnight. My left hand ended up not working correctly five days after the accident. I woke up and felt a very strong weakness in my left hand. I called my neurologist that I see for migraines…
continue reading

Take Control of Your Journey

Published on May 5, 2021 under RSDS General Info
Written by Joshua Borg for the RSDSA blog. How and when did you develop CRPS/RSD? In July of 2019 I slightly hit my shin against a piece of lawn equipment. Later that day I could tell something was wrong based on how it felt. In the following weeks and months, I visited with multiple doctors who ran multiple tests, yet none of them could explain my pain. After an EMG around February 2020, doctors noticed nerve damage in both legs. After ruling out almost everything else, they determined that I have CRPS. What has daily life been like since your diagnosis? In the simplest terms… different. Having had this for a little over 18 months now, I feel as though I…
continue reading

The Horror of Being the Parent of a Child in Daily Screaming Pain

Published on April 7, 2021 under RSDS General Info
Originally written by Dr. Katinka van der Merwe on The Spero Clinic blog. To Parents of Children with CRPS – I want to acknowledge one of the groups of people affected by CRPS the most—: parents of children with CRPS. It doesn’t matter if your baby is two years old or fifty-three. As a mother myself, I think the only pain worse than CRPS is watching your child suffer from it. My phone calls with you, brave parents, both horrify me and inspire me. You tell me stories of endless suffering. Stories of your daughter missing her prom, and of your son never being able to walk on to a baseball field. Stories of your children crawling instead of walking, and…
continue reading

New Ways to Give to RSDSA

Published on March 3, 2021 under RSDS General Info
The team here at RSDSA is appreciative of the contributions provided to us as we work to fulfill our mission. Since we are here to meet the changing needs of the CRPS/RSD community, we also want to inform our community of the ever changing ways you can help fundraise and donate to our organization. Here are a few ways you can donate to RSDSA so we can continue to provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure. Donating Funds From an IRA Money that you have in an individual retirement account (IRA) can be donated to RSDSA. Additionally, if you have reached…
continue reading

Chiropractors and Philosophy: A Perfect Match

Published on February 17, 2021 under RSDS General Info
Written by Dr. Katinka van der Merwe for the RSDSA blog. Few topics I have discussed in my career have drawn more attention, more praise, and also more criticism than the following one: the medical fallacy of treating chronic pain. I have treated approximately 560 patients suffering from CRPS as well as Ehlers Danlos Syndrome, and often see success where medical science has failed. These patients have been everywhere in the world, to the most renowned clinics, such as the Cleveland Clinic, CHOPE, and the Mayo Clinic, and yet they have not been able to find answers. I now consider myself as somewhat of an expert on the topic. I have certainly devoted my life to giving hope to those…
continue reading

How Art and Apps Helped My CRPS

Published on January 27, 2021 under RSDS General Info
Written by Deanna Hart for the RSDSA blog. How and when did you develop CRPS/RSD? I rolled my ankle while working in a high stress environment in September 2019. What has daily life been like since your diagnosis? For the first six months, I did not know if I would get better; it seemed to only get worse. I could hardly walk with my left foot as it felt like the tissues in my ankle and foot were tearing, my foot was rigid, often strangely discolored and had strange temperatures. It felt like I had muscle spasms tearing my ankle and foot apart from the inside, even while at rest. At high stress times, my past injuries and pains in…
continue reading

Be kind to yourself. Don’t beat yourself up.

Published on January 6, 2021 under RSDS General Info
Recorded by Lisa Folsom for the RSDSA blog. Listen in as Lisa details how a 2015 injury of her left pinky finger caused her CRPS, her diagnosis, education for friends and family, treatments, and much more. https://youtu.be/wLQMEWbqAGw   Learn more about Lisa via her YouTube Channel and her Instagram. If you're interested in writing or recording your story for the RSDSA blog, please send us an email at alexisdavis@rsds.org. Please consider making a donation to RSDSA today! --   We've also included the full transcript of Lisa's video: Hi, everybody. My name is Lisa, and I am the 44-year-old wife to a wonderful and handsome husband, the mom to three pretty darn good kids that are now in their 20s…
continue reading

Hit The Ground Running With Everything You Have

Published on December 9, 2020 under RSDS General Info
Written by Teryl Worster for the RSDSA blog. How and when did you develop CRPS/RSD? On June 4, 2020 I sustained a fractured bone in my right hand from a kick from my horse. What has daily life been like since your diagnosis? I had never had a broken bone in the 54 years of my life and I was very active, so I was not sure what to expect. Things went fairly well at the onset as I have a high tolerance for pain and was a certified personal trainer, so I felt that I could bounce back relatively quickly. I also own and operate a wellness spa, so I felt that I had all I needed at my…
continue reading

Nerve Pain Is Hard to Explain

Published on November 10, 2020 under RSDS General Info
Written by Heather Maerten for the RSDSA blog.  My name is Heather Maerten and I'm a mother of three and a pediatric nurse. How and when did you develop CRPS/RSD? In August of 2015, I was working as a nurse in emergency transport for Children’s Hospital of Philadelphia. During a call, I rolled my ankle coming off the helicopter. I went to urgent care after my shift and was diagnosed with a sprain after the s-ray was misread (my talus bone in my ankle was actually fractured). From August to April, I saw multiple doctors and completed six weeks of physical therapy on a broken bone, unknowingly. In April, I met with a specialist and after multiple images it was…
continue reading

CRPS Warrior Kathleen Coleman’s Story

Published on October 28, 2020 under RSDS General Info
Submitted by Jay Conner and Kathleen Coleman for the RSDSA blog. CRPS Warrior Kathleen Coleman is the biggest Tampa Bay Lightning fan you'll ever meet. She lives in Arizona and wanted RSDSA to help share her message of hope and gratitude via the below video by Jay Conner of Jaybird Media. Please consider making a donation to RSDSA today!
continue reading