Hi
I am sorry to learn about your condition. As you probably know, there is no cure except for symptomatic treatment. There are many clinical trials going on to get a cure. If you want, you could discuss with your parents and register with them. I am posting a link with all the details and the link also gives details of organizations where you could get specialists in this area. Please take a look at this link for treatment and organizations: http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm
For clinical trials: http://clinicaltrials.gov/ct2/results?term=Dysautonomia
There are many support groups where patients share their problems and solutions to those problems. Join one such group. I am providing one such link: http://www.potssupport.org/what_is.html
Hope this helps. As you know you have to be brave and strong to deal with your problem. I am glad you are seeking answers. If you need more help, please feel free to contact. I’ll be happy to answer your queries. Please keep me posted.
Ya I do hate when nobody answers me. Thank you for your help and thanks for answering me!
Dont you hate when you post something and nobody answers you?
Happens to me all the time.. oh well..
Try this website out, they know all about Dysautonomia and can help you better than anybody can!
www.imazebra.net