My name is Jennifer, I am 12 years old and I live in a suburb of Philadelphia. I am a member of DYNA. I am also the Youth Hospitality Coordinator for the Youth Network and I am responsible for sending everyone birthday cards on their birthdays and remembering them on special occasions. I was diagnosed with Neurocardiogenic Syncope when I was 11 years old. This year, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome. This is my story:

     In September 2000, I went on a 3-day trip with my class to a camp called Spruce Lake. The first night we were there, I started feeling sick. My parents came and picked me up, and I went to the doctor and they told me I had a virus. We did not know it at the time but this virus actually turned out to be what triggered my NCS and POTS.

     I was out of school for about a week. I tried going back to school but it seemed like the virus just didn't go away. I only made it about 2 days. When I couldn't shake the virus I went to the doctor again. They did a blood test, and I got an upper GI done. The upper GI showed that I had pretty bad acid reflux, and the blood tests didn't show anything. Since they still didn't really know what was wrong, and since my stomach was my worst problem at the time, they sent me to a Pediatrician named Kevin Kelly. He specialized in stomach problems.

     Dr. Kelly told me that he was pretty sure I had NCS. Just to rule out anything else, I got an endoscopy done to see if there was actually something wrong inside my stomach. They didn't find anything, so Dr. Kelly decided to send me to Dr. Donner, who is a Cardiologist at Children's Hospital of Philadelphia. Dr. Donner told me that he didn't really know too much about NCS, but he saw a lot of kids like me and he said I would probably grow out of it in 6 months to 2 years.

     Dr. Donner put me on some medications, most of which didn't work. Then they decided that they wanted to see if there was anything on the outside of my stomach, so I had to get a CAT scan with an IV with dye in it, to show the outer lining of my stomach. They didn't find anything there either, so then they just figured that I had NCS.

     In the meantime, I wasn't making it to school at all. About all I could usually manage to attend was 1 class a week. By the end of the school year, I ended up missing about 120 days of school. We decided that I wasn't able to go to my local school this year, and we weren't sure if we were going to get a home tutor or not. Luckily, we found an article about an online charter school here in Pennsylvania, called The Einstein Academy Charter School. We decided that I would enroll in it. It has been very good for my situation because I can work whenever I am feeling up to it.

     In February, 2003, I ended up getting an appointment with Dr. Blair Grubb, in Toledo, Ohio. We didn't really want to drive that far, and through the kindness of others we ended up getting free plane tickets and being able to do most of the trip for free. I even got to ride in a limousine for free! When I got into the appointment, Dr. Grubb told me that I had both Neurocardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome. He put me on a medicine that we are still experimenting with, and told me to start "reconditioning" myself, which means doing 20 minutes of aerobics 3 times a week. It sounds easy - but it's not if you have dysautonomia.

     Dealing with NCS and POTS is very hard. You have some days that are better than others and it's constantly a balancing act. When you are not in regular school, you don't get to see your friends as often, and you miss out on things that most kids get to do. It is hard to explain your condition to people, especially when they think you look fine and they don't see anything wrong with you. I have been lucky though, because I usually see my friends about every weekend, and all of them "believe" me about what I am going through. That doesn't happen to a lot of the kids in the Youth Network and I know I am lucky for that. Well, I guess this wraps up my story but I just wanted to show you a little bit of what kids with these conditions deal with. Having the Youth Network really helps me because I don't feel so alone in dealing with this.