Hannah's Story
Hello there, my name is Hannah, my friends call me Peanut.
I'm 10 years old and have Vaso-vascular syncope. That's a pretty big word for passing out or fainting.
I don't get any warning signs before this happens and find myself waking up on the ground . I get scared and sometimes start to cry. I'm usually okay after just a few minutes but sometimes I get really tired and need to sleep for awhile. A good nap for an hour makes me feel better.
There are things called triggers, this is what has happens the instant just before I pass out. There can be just one, or in my case several things that can cause me to faint. When I get hurt or feel pain, if I see blood, really loud noises, or if I get scared or frightened, basically anything I don't expect to happen that startles me. Not everyone has the same triggers and it is hard to deal with not knowing if something is going to happen to make me faint.
When I fall sometimes I get hurt pretty badly. I have had to go to the hospital a lot. Before I got the diagnosis it was hard telling medical people the same things about what happens to me. Since I didn't really know, they just kept sending me from one doctor to another doctor for tests. They always ask tons of questions and always the same ones. They poke me with needles (needles also makes me pass out so I pass out again), take MRI scans and x-rays (mom says I'm going to glow in the dark), blood pressure checks, eegs, ekgs, heart monitors ( I had both kinds- 1 for 48 hours the other I to wear all the time for a month).
Usually I go to the same hospital but sometimes I can't because we are not near there. I had to go to a different hospital once and mom told them I have syncope and it didn't matter I still had to go through all the same stuff. Later she was crying because they had checked my blood for drugs and poisons I heard her tell my dad ( I was listening at the top of the stairs). So far I haven't needed stitches or anything but I hit my head so hard one time I couldn't hear for 15 minutes and everything went black and white. That was scary, so of course I passed out again.
I never knew any one that has this condition. Some kids at school have asthma, diabetes and leukemia but everyone knows about it. The teachers, parents even the kids. It seems like nobody has ever heard of what I have. At first I felt like I was the only one on earth that ever passed out. My mom had to tell everybody! Every single person I knew she had to tell. The school principle, ,all my teachers, bus driver, gymnastic instructor, our whole family of grandparents, aunts, uncles cousins, second cousins, neighbors, playmates (get the picture) over and over again what syncope was, how to help me, if it was contagious, and that I didn't need special treatment or classes and even that it was NOT life threatening. I felt horrible. Some parents were even afraid to invite me to birthday parties and play dates. Imagine going through this everyday. It is so unfair. I feel ashamed. People are afraid of me only because they don't understand about it.
My parents thought maybe I should be home schooled and pulled me out of school. They didn't want me to feel bad all the time. They just wanted me to be safe. Even though I wasn't any safer really at home at least they knew what to do if I had an episode. My doctors ( I have a lot of them ) tell me I'm not the only one with this and that many people have this condition so not to fret about it so much. They all said I should go back to school for reasons they talked about at length. I had my own questions about all the people that have this condition and I asked "Who are they?"." Where are they?"."Is there another girl just like me?"."I want to know them."
Mom inquired about a support group that I could join to help me deal with some of the issues that I was having but no one knew of any. Mom spent days making phone calls, going through the phone book, going to the library and finally after several more days on the computer posting on every web-site on the internet she could, someone told her about STARS. I was (am) so happy to find out about the Stars organization and a web site that explains everything about what I have and how to help me. Not only that, but it has information for teachers and for anyone else that needs it. I wish I could say the best part of all is the newsletter with all the great stuff but for me it was finding friends like me on the chat group support page. (Good there's a moderator on there too) I get to meet kids just like me and I know these kids have the same problems I do. There we can talk about how we did today, doctor visits and support each other when we have bad days. It has really helped me a lot. I'm grateful to Stars. I am back at school now and not having too many episodes lately. When I do, I know that I not alone anymore.
I have made many new friends with the help of STARS. Thank you so much. More people need to know about STARS. I think everyone who suffer from what I have should know that they are not alone.
Your Bffl - best friend for life,
Peanut ~ Hannah Kurkechian Howell, Michigan USA