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About a decade ago, in response to the growing trend of more and more teens and their parents contacting us looking for other teens to talk with, we decided something had to be done. As much as we adults with RSD can relate to teens with RSD, there is a large gap there as well.
We felt we needed to create a place where teens could help each other and in the process help themselves. I talked to Betsy Herman, a teen who had RSD whom had met on-line at the time, about it as well as a few other teens, and the rest is history. Betsy worked hard for this program and she and the other teens have helped many many other teens cope with this nasty disease at a time in their lives when their biggest worry should be what they will wear to the Prom or which College to go to or just the simple pleasure, trials, and tribulations of being a teen.
Instead they are faced with Drs, friends, teachers, and even some parents who disbelieve their pain as well as the problems that come with RSD that we all know so well. Can you imagine studying for a test in school or college when you have no short-term memory? Personally, I do not know how they do it and I admire them greatly for their perseverance, determination, and strength.
These teens, they are little sisters and brothers of mine, are very dear to me. Many do not know this but my RSD started when I was 14, in 1974. It started in my eyes. It wasn‘t until 1985 that it went full-body after an automobile accident and extenisve subsequent back surgery. But teens today face so many more obstacles than I did then.
I remember the struggles with Drs. and specialists of all sorts to try and get them to understand that the incredible burning pain was NOT in my head and I was NOT making it up for attention, as they so often told my parents.
I was fortunate. My parents never doubted me for an instant. Many teens out there don‘t have that luxury and it makes their struggle and their need for support even greater.
Now a few years have passed and Betsy has graduated, as have many of the original teens. Many have even gone on to graduate school.
You would be amazed at the level of maturity these young people have. Sometimes, seeing what they have gone through at such a young age, and having had experienced it myself at that age, I just want to hold them, to let them know it will be ok. But you know, they are so strong, and they are there for each other, they support each other very well. They have an amazing network of myspace pages and they email and text each other all the time.
When we started the RSDHope teen corner nearly a decade ago we never expected it to do as well as it has. We hoped it would be a benefit of course but you just never know with these things. But now we have some of the original teens who went on to college, come back and talk to the new teens and let them know anything is possible. So many of them have gone on to become teachers and therapists! I am so proud of my kids, can you tell?
Now we have an active listserv on Yahoo called RSDHopeTeens. If you are a teen and have RSD/CRPS and would like to meet others, have questions, want to share support, ideas, awareness, information, or just shoot the breeze then drop on by. The information on joining the RSDHopeTeens listserv is in the next section.
Hugs and peace, your big brother, Keith
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