Hello Everyone!
I’d like to start my blog off with a quick explanation of what Ehlers-Danlos Syndrome is, so from here on out you will be more familiarized with what I will mostly be writing on. I am very grateful for the love and support I’ve been given from not only friends and family, but my EDS family as well. When I write, I’m not only speaking for myself. There is a whole community of people out there that are fighting alongside me.
Ehlers-Danlos Syndrome (EDS) is a genetic chronic illness that involves faulty collagen. Since the collagen in an Ehlers-Danlos patient is faulty, anything in the body that has to do with collagen is fair game for the illness. Collagen is the most abundant protein and it is what holds us together. Your bones, muscles, skin, tendons, and ligaments have collagen in them, as well as your corneas, intervertebral disks, blood vessels, gut, and teeth. Fun, right? Keep that in mind when speaking with an “EDSer” because I like to compare Ehlers-Danlos patients to finger prints, each one is different. Where my shoulders, ribs, clavicles, and hips are what I am currently struggling with, you may meet someone tomorrow that has EDS with a completely new set of signs and symptoms. Not only do you have to learn each one of us personally to truly understand our problems, but our issues can also worsen over time and we will most likely slowly progress downward. There are 3 basic type of Ehlers-Danlos Syndrome and they are Classical, Vascular, and Hypermobile. The classical and vascular can be confirmed by genetic testing however the hypermobility type cannot. Hypermobility type Ehlers-Danlos is diagnosed using what is called the Beighton Scale. Ehlers-Danlos patients have a wide range of really weird signs and symptoms which make it difficult for doctors to diagnose when they haven’t been trained to look for it. The biggest signs of EDS would be the chronic dislocations as well as subluxations, and a wide range of motion. The symptom list is very long, but for me, chronic pain is at the top.
I believe that this new generation of doctors, though, is learning about the illness and will know to at least look for the signs in their patients. That is a BIG deal and I believe we are coming a long way. There is no cure for us. Doctors can only treat the symptoms we face. Although I do also believe that there will one day be better treatment plans available which is why I fight every day.
I truly appreciate your interest in this illness. My main goal is to spread awareness of not only the illness, but the symptoms that you simply cannot see. You never know what someone is battling until you take time to know them.