Dysautomia Education

Dysautomia/ POTS/Neurocardiogenic Syncope is not the most common disease, and as a result, few people know about it or even recognize it. It presents in a variety of ways and has many symptoms. For example, one person might faint several times a day, another person will just get tired easily, and another might experience different symptoms. I have seen many doctors over the past six years due to the fainting. There is no "quick fix" or magic bullet for this disease.

 I consider myself lucky if a doctor has seen or heard of it before. My father pointed out that this disease seems to strike young adults- people in their late teens, twenties, or early thirties. Due to this, and the fact that there isn't a quick fix, doctors don't know what to do. If someone is having a heart attack, you do a bypass. If there is an arrhythmia, simply implant a pacemaker and try to control this with medication. However, with dysautonomia there is not a lot one can do. Yes, there is medication that helps, but it does take time to see how that works. It isn't a black and white diagnosis. Due to this, many doctors will say, "Oh, it is just stress." or "it is all in your head." Sorry, but I think fainting 15 times a day is a pretty good indication that something might be wrong.

This disease can take over your life. You never know if it is going to be a good day or a bad one. It robs you of sleep, of doing things, and of your independence. It effects your friends and family as well. I never thought that my parents would say, "Ok, pick a floor, but don't go upstairs unless we are here." This was simply a safety thing. I never thought that I would need to make sure it was ok to fall on someone if I fainted during an event, or put a towel on an empty chair so that I could fall that way during a meal. A few years ago, a friend and I were volunteering in an ESL program at church. I never thought that the students, who had degrees in subjects I couldn't do if my life depended on it, would willingly cover for me when I fell. Later on, I discovered that the fainting scared the volunteers, but not the students.

I have been dealing with this disease for six years. I have two brothers- one who understands the problem and one who doesn't.  B, the brother who doesn't "get it," despite being told in plain English about this disease, had an epiphany. Apparently, one of his business contacts has the same thing, but her case is not as severe. One day, I got a call from B asking if I had dysautonomia and then asked if I had POTS. B went from total denial to starting a support group in one day. By the end of that day, I had an email from my brother including the names of two doctors who treat this, and a way to contact some others with the same disease.

So many people have to deal with this disease alone. Even with a pretty supportive family, it is hard. You can't pin down the problem. I'm lucky that many of friends understand this disease. I also know that it scares my brother. Still, once he realized that we weren't the only family dealing with this, his attitude changed. He isn't as scared of the fainting.

I guess my point is that we  need more education about this disease- both in the medical community and in public. There may not be a treatment yet, but there will be one day. I think education is key.