Hi! I'm Betsy, coordinator of RSDHope Teen Corner. Welcome to our little space on the web!
This site is a place for us to express our feelings, and show them to the world. We are kids suffering from reflex sympathetic dystrophy, a devastating and excrutiatingly painful neurological disorder, a disease that has the potential to cripple our bodies, and leave us with permanent physical disabilities and handicaps. RSD atrophies our skin, muscles, and bones, but it doesn't have to atrophy our souls.
We are not alone! Together we will win against this monster called RSD. We are much stronger united than we would be separately. Having others who understand at just a click of a mouse away is an important thing. We can give each other strength, and share experiences...and just talk about regular things like any other teenager would.
If you are a kid or teenager with RSD, please feel free to e-mail me. New members are always welcome, so don't hesitate to join!
Please, stay a while, and look around. Read what we have to say. Please sign the guestbook if you have a chance, too. Suggestions and comments are always welcome. Thanks!
-Betsy
Over a year 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 as well.
We felt we needed to create a place where teens could help each other, and in the process help themselves. We talked to Betsy Herman about it, and the rest is history. She has worked so 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 pleasures, trials, and tribulations of being a teen.
Instead they are faced with Doctors, friends, teachers, and even some parents who disbelieve their pain and 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 twelve. I had it in the eyes only.
I remember the struggles with doctors and Specialists of all sorts, to try to 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. It makes their struggle and need for support even greater.
This RSDHope Teen Corner is a place that can provide that support. It allows teens to share experiences and information, and most of all, it allows them to just be teens, instead of always being patients. If you are a teen, or parent of a teen, please make use of the wonderful experience at this site. For the rest of us, let us keep them in our thoughts and prayers.
To all of my little sisters and brothers, know we are here for you, anytime, day or night.
Hugs and peace, your big brother,
