EDS

For those of you who didn't know I have a rare syndrome that is called Ehlers Danlos Syndrome or EDS for short. To help my friends understand what I go through with this syndrome I want to explain it to you.

1. "double jointed" This is a word I hear all too much and it has been a huge part of my life. Growing up I thought I was just flexible however this is not the case. My collagen does not work right in my body and allows my joints to stretch past their limits.

2. pain. My joints not only hyper extend but they often pop out of place. I don't need to go to the hospital for this as I can pop them right back in. I get muscle spasms and chronic pain from these experiences. I also bruise really easy but no I am not anorexic. Just EDS. Migraines are also a thing I go through due to the muscle spasms in my neck and all that.

3. Exhaustion. If I get up too quickly all the blood will pool in my legs for a good couple second to a minute. This causes everything in my vision to just kind of go black even though it isn't really visible or noticeable unless you are me. This pooling also causes me to tire more easily as my heart has to work super hard and low blood pressure can keep me from going for too long. I sleep a bunch and when I am not sleeping I am pretty tired or at least my body is. Adrenaline will kick into high gear at night and cause crazy insomnia sometimes waking me with my heart racing. During the day it is super low which is another reason I get so tired.

4. My face. Sometimes EDS is a blessing as well as a curse. My skin is super soft and i have big eyes and a skinny nose. On the other hand My skin doesn't heal easily so cuts and bruises last forever. My eyes have a bluish tint where they are supposed to be white and my vision sucks. I am very near sided as my eyes aren't held in properly.

5. My voice. Also a double edged sword, I have a crazy incredible vocal range but then again if I stretch my vocal chords too much I could go permanently hoarse.

6. My life. I have to make a lot of changes because of this syndrome that I had no idea about. The disease is so new and rare that most doctors won't recognize it as they never learned about it. I have to find a specialist to handle my changing body. When I am older I also should avoid having children as it could worsen my condition and give a worsened version to my kids. Eventually depending on how bad I get a wheelchair could become my personal mode of transportation. Laundry and tasks that require me to stand for long periods of time is really difficult for me. Of course I won't let EDS stop me but it is so important that I and those around me understand my limitations.

This is a new discovery that is hard for me to go through but I am glad I know. I can finally get treatment for things that have plagued me. Though there is no cure splints and braces help the pain and now I know to get them.