Sara831 Posted July 19, 2004 Report Share Posted July 19, 2004 I am 15 years old and have a few dysautonomic disorders. My Cardiologist and Nuerologist have described it as 'a ball' of things including NCS, POTS, and OI. There still looking for and underlying cause and why some of my symptoms leave them clueless. My mom also has dysautonomia, so she understands what i go through. It is great to have someone who understands, and she is my best friend so i can really talk to her. But when I turn to anyone in my age group i become a victom of the horrible sentence we all hear 'Well, you look fine' and they think im crazy or that im faking it. I think they dont even want to understand. I drives me out of my mind!! i really would like to talk to someone in my age group who is going through what i am, but i cant seem to find any. Are there any of you out there?? -Sara Quote Link to comment Share on other sites More sharing options...
UnicornIsis Posted July 19, 2004 Report Share Posted July 19, 2004 Sara you are NOT alone!!! I am 21 and have been sick since I was 19. I have NCS and POTS. There is a WONDERFUL group for kids that I belong to called Dysautonomia Youth Network of America--DYNA. The website is DYNAKids.org. Its FREE to join and there are LOTS of GREAT kids your age. Girls and boys. Some newly diagnosed, some who have been dealing with it for a long time. We just had our annual Summer Chill in Ohio last week. It's truely AMAZING to actually meet other people our age in person who have the same thing we do. My screen name if you want to talk is UnicornIsis4 @AIM, UnicornIsis @yahooIM, Luna_Sekhmet @hotmailIM.PLEASE get in touch with me!! I know exactly how you feel!!! Quote Link to comment Share on other sites More sharing options...
Brwneyedchica Posted July 20, 2004 Report Share Posted July 20, 2004 Sara,I would definently recommend checking out dynakids. There are alot of younger people on that site. I know how you feel. I was 15 when I first got sick. I'm now 20 and there are still times when people look at me in disbelief when I tell them that i'm sick. Hang in there, it's rough sometimes. Quote Link to comment Share on other sites More sharing options...
Sara831 Posted July 20, 2004 Author Report Share Posted July 20, 2004 Thank you both so much for letting me know im not the only dysautonomic teen. I will deffinently sign up with Dynakids. I am going back to the beach in a few days but i when i am able to get on the internet regularly when summer ends, i am looking farward to really finding more teens with dysautonomia and trying to go to some conventions too. I added UnicornIsis4 to my AIM buddylist and i hope i can talk to you in the future. Thanks agian, and good luck! Quote Link to comment Share on other sites More sharing options...
ethansmom Posted July 20, 2004 Report Share Posted July 20, 2004 It's definitely tough to be young with dysautonomia. It brings a whole set of problems that you wouldn't have if you were older, and we understand I was 19 when I got sick, and it's been tough- but I imagine being in high school has to be even harder. It seems like you've find the right place and I would definitely check out DYNA- it's always great to talk to others who can relate. Quote Link to comment Share on other sites More sharing options...
Meghan Posted July 21, 2004 Report Share Posted July 21, 2004 Hey Sarah, I am 19 and I have POTS. I was diagnosed in December 2003, but I think I have had it for well over a year now. I would love to talk sometime; my AIM is Meg6327. Also, I am a member of DYNA, and I've found that it's an awesome way to meet people who are going through the same thing I am. A lot of the kids in it are around your age, so I am sure you could find tons of peope to talk to! Hope to hear from you soon!Best Wishes!~Meghan Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 22, 2004 Report Share Posted July 22, 2004 Thanks you guys for suggesting DYNA, as that group specializes in kids with dysautonomia... you're all getting so good at helping each other, I think I can take another vacation now Quote Link to comment Share on other sites More sharing options...
Sara831 Posted July 22, 2004 Author Report Share Posted July 22, 2004 Thanks for your DYNA suggestions, i am now a part of DYNA and soon i will meet tons of dysautonomic teens. Im so glad that I'm part of such a great orginization. Thanks agian! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.