I was invited a while ago to guest post on Screaming Voice of Reason and I couldn’t think of anything to write about. Rather, I could think of plenty to write about, but I couldn’t limit myself. Alternative parenting? Veganism? Human responsibility and rights? That’s all too much for me to conquer in one guest post so I’m going to write about something that is with me every day and very dear to my heart.
I have an incurable syndrome. A disease if you will. As I’m sure you know, incurable means that it won’t ever go away. It won’t ever get better, and more likely than not it will get worse. It has already gotten worse. The name is Ehlers-Danlos Syndrome. You probably haven’t heard of it, and if you have, you probably know someone that has it. The most common type of EDS has stats of 1 in 10,000 to 15,000 people. That equates to 200 people in the Kansas City Metro. 30,000 in the entire United States. That probably sounds like a big number, but it isn’t. Lupus, another rare disease, is estimated at 159,000 out of the 300 million people living in the US.
I bet you’ve heard of lupus, haven’t you? You can’t watch the tv show House without it being mentioned. There is information on it within easy access. It’s a fairly common name in households for a rare disease. I love it that this is so, because that means that people that are suffering with it can be treated.
What about the other rare diseases, though? If you look at the Rare Disease List it’s rather extensive. Some are more rare than others, but they are all not exactly fun to live with. Doctors don’t know about them.
You heard me right. Miraculously my general practitioner new what Ehlers Danlos was, and the geneticist he sent me to, but there are people I have spoken to that have had to fight tooth and nail to have their disease recognized. I know they aren’t the only ones.
I’ve had EDS since the age of screaming newborn, and I’ve been told so much shit throughout my life about what was wrong with me. It was even hinted at that I was a hypochondriac. Can you imagine the relief when I found out I wasn’t imagining the pain? That I wasn’t a clumsy beast with a joy for falling into doorways and getting bruises? Probably, you can’t. It’s a rare disease, and chances are you don’t have it.
And so does this other person over here that you’ve never spoken to, but they haven’t been diagnosed. They’ve been told to suck it up. They’re in debt because of medical bills where doctors have told them that nothing was wrong with them.
Rare diseases have been argued as not being as important to put into the media because far more people have cancer or autism. I do feel for these people, but what I want to say is this: There are 30,000 people in the United States with EDS. That number is small in proportion to 300 million, but that’s also the population of Juneau, Alaska. If someone radiated that whole city and they had to suffer from the effects for the rest of their lives, it would make media headlines.
This is a message to the media, to the doctor’s and to the ordinary people out there. There are more illnesses out there every day, and most of them don’t have a colorful ribbon or a pretty spokesperson on the television. There are people in pain that are being told it’s in their heads.
It could be you.
If you’d like to read more, check out the blog at CookingComrade.com