EDS Awareness Month

May is Ehlers Danlos Syndrome Awareness Month. Because of this I will be posting daily (I hope) with different EDS facts.

Now, the next question has to be, what is Ehlers-Danlos Syndrome? Here's where it gets tricky. There are several types of EDS and they very greatly from each other. There is a huge list of possible symptoms associated with EDS, but they're found in different combinations from person to person. The short answer is as follows:

Now do you understand? No, well, you're not alone. Ehlers-Danlos Syndrome is a collagen defect that can affect anything in your body that uses collagen. Collagen makes up 25% to 35% of your body's protein content. It's mostly found in your ligaments, tendons and skin. However, collagen is also found in the corneas of your eyes, cartilage, bones, blood vessels, your gut, intervertebral disks, the dentin in your teeth, and even your muscles.

That's quite a list isn't it. If you're wondering why it's so hard to diagnose and why there are so many different sympoms that can occur in combination just look at that list again. Not everyone who has EDS has problems with everything on that list and everyone with EDS has a variety of the problems listed. EDS is divided into types because of the huge differences that those with collagen defects can have. Some have problems with internal organs rupturing, some have problems with excessive bleeding, some have joint laxity, some have problems with digestion, some have problems with their eyes, some have problems with their teeth, but the combinations are different for everyone. Even within the same family you will have different severities of problems. A mother might have only slight joint laxity while her child might have to stay in a hospital because of organ ruptures and excessive bleeding. Someone might look completely fine, but be falling apart on the inside, literally!

EDS is an invisible illness. This means that for most of it's sufferers there are no definite signs of illness. There's no one sign that makes you stand out in a crowd. EDS sufferers look just like everyone else. They come in all body types, shapes and sizes. There is no racial preference, no gender preference, no social preference, anyone could have EDS.

Even better, they're not sure exactly what causes it. There are certain types that have been linked to chromosomes, but it doesn't work for everyone. They just don't know yet. There are thankfully more experts that are researching EDS and thanks mainly to sufferers there is much more awareness (like this post for instance) but there's still a long way to go. It saddens me to say it, but England has made much more progress in this field than the United States has. We're still fighting with being recognized by many as being something legitimate.

So, how IS EDS identified?

It is estimated that between 1 in 2,500 and 1 in 5,000 people are effected by EDS. That makes this the most under diagnosed disease! Think of how many people are in your town. Now think of how many people in your town might have EDS. How many of them have you probably met and never known it? In the town that I live in there is an estimated 36,000 people. That means statistically that there is between 7 and 15 people in the area with the disease. New York City has a whopping 8,400,000 people which would mean an amazing 1,680 to 3,360 people.

To put this into perspective, Muscular dystrophy is thought to affect only 1 in 544,000 people, that makes EDS 109 to 218 times more prevalent than muscular dystrophy! There is by far more known about muscular dystrophy and nation wide fundraisers for a cure in the United States every year. They don't even really understand what EDS is yet. This is why this post and the others like it on the web that are being made this month are so vital. EDS is not fatal for most of it's sufferers (Classical type is generally fatal and living into your 20's is a miracle) but it is life altering for many.