No RND story can be told in only 5,000 characters, but in a nutshell.... (yes, believe it or not, this is a nutshell)
I started with some stomach and back pain towards the end of 8th grade. I saw a bunch of doctors and had a lot of tests done, but according to them I was "technically" normal. I tried some physical therapy which helped for a while, but the pain soon returned, even more painful than before. It kept getting worse until one day while taking a health final in 9th grade, the pain traveled down my butt and into my leg. It was so painful but I continued to go to school and play softball. I went to Disney World for a softball tournament, and I was just in pain for the entire trip. We tried all sorts of medications and treatments to relieve the pain and was put in a back brace for 6 awful weeks but I just kept getting worse and worse and nobody knew why. Eventually, over Thanksgiving break of 10th grade, the pain continued down my whole leg and into my foot and I couldn't walk anymore. I couldn't go to school anymore. I spent a month on crutches. My foot got so painful and sensitive that if anyone even so much as touched it, I would just shout out in pain. I would get terrible back spasms and would just lie on my bed and scream and cry. After seeing a bunch of doctors who couldn't figure me out, I was referred to Dr. Sherry at CHOP and on December 23, 2008 I was officially diagnosed with RSD/RND. I did a lot of physical therapy with one REALLY amazing and dedicated therapist who is now a really close friend until I was finally admitted to the super intense 8-hour-a-day therapy program at CHOP, complete with PT, OT, pool therapy, art/music therapy, talk therapy, etc. She pushed me so hard through the pain to beat the RSD, she never let me give up, even when I desperately wanted to, which helped me get through the CHOP program. I spent 3 weeks there the first time and I returned to the program again in the summer of 2010 for another 3 weeks when the pain came back in my shoulder. Now pain has returned in my stomach and back and I will be returning to the program for a third time in December, over my winter break.
I've had some really good times since all this started, but my fight isn't over. I have had a lot of amazing people helping me through these awful times and have made some incredible, lifelong friends because of this disease, but my life has changed a lot. I missed, in total, almost an entire year of school. It took me over a year to get diagnosed. I missed my junior prom, I missed softball tournaments, I missed piano events, I lost some friends, and I lost so much time I can never get back. Please donate and help us spread the word about RSD/RND so other kids can get diagnosed faster, get treated faster, get their lives back faster, so they don't have to miss all the things that me and so many of my friends have had to miss because of this monster.
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The Childhood RND Educational Foundation, Inc, a 501(c)(3) non-profit organization dedicated to educating health professionals and families.
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