May is Ehlers Danlos Syndrome Awareness Month. If you don't know what that is, here are the basics.
Ehlers Danlos Syndrome is a group of connective tissue disorders that cause stretchy skin, loose joints, easy bruising, and heart problems. Ehlers Danlos, or EDS, also comes with many comorbid conditions. Some of which include Postural Orthostatic Tachycardia Syndrome, or POTS, Gastroparesis, and Mast Cell Activation Syndrome, or MCAS. All of these are connected to EDS, and caused by genetic mutations. There are 13 different types of Ehlers Danlos Syndrome, all caused by different mutations. There is no cure for Ehlers Danlos.
The type of Ehlers Danlos Syndrome that I have is Type III, or the Hypermobility Type. This is the only type of EDS without a known genetic mutation.
My blog is called The Salty Zebra, which may seem random, but it does have a meaning. The Zebra is considered the mascot of Ehlers Danlos Syndrome, because in medical school, many doctors are told, "When you hear hoofbeats, think horses, not zebras." This means to look for more common conditions instead of searching for the rare ones, like EDS. Ehlers Danlos is a rare disease, so we identify with the zebra. The salty part, is because I also have POTS. Part of the treatment for POTS is to greatly increase salt intake, so I say that I'm always salty. (If you don't get that joke, it's funny I promise)
For most of my life, I had minimal symptoms, as do most people with EDS. I would get hurt a lot, but we wrote it off that I was just a clumsy kid. I was constantly covered in bruises and wrapped in some brace or wrap.
Just last year I finally received a diagnosis : Hypermobile Ehlers Danlos Syndrome.
The problem is, there isn't a lot of doctors that even know what EDS is, and even less that know how to treat it. I was lucky that my Primary Care Physician knew what it was and how to help me.
So now, I wear special ankle braces to keep my ankles in place, wear braces on my joints, and when I need to, I use crutches or a wheelchair. This doesn't make me any less of the person I was before. I am still the same girl, just stronger. Using a wheelchair or braces doesn't make me weak. It shows that I am strong and willing to fight and not let this disease take over my life. I know I will not be cured, but I hope that I can help to spread awareness and information about EDS.
