Ehlers Danlos Awareness Month

May is Ehlers Danlos awareness month, and in honor of that this week's post is going to be about my (Nemo) journey and struggles that I have had with Ehlers Danlos in the past. Ehlers Danlos is a connective tissue disorder which affects the entire body. This makes joints hypermobile and my body is prone to dislocating. While this condition is incredibly painful and makes life difficult on a daily basis it is also an invisible disability.
        Although I was not diagnosed with EDS until I was 20 looking back there were signs of it throughout my entire life. As a kid I would always fall and get hurt. We would than have to go to the doctor, get the arm or ankle x-rayed and find out that it was not broken just most likely hyperextended. In middle school my kneecap completely dislocated and instead of panicking I kept walking on it since it was a sensation that I had felt before.
        Getting diagnosed with EDS was not easy. I did not want to go to see the geneticist for fear of what I would find out. At that point of my life I had just started nursing school, and I was afraid the geneticist would tell me something that would change my entire future. That seems silly because they would only give me a name, however, a name could potentially tell me what my future would look like.
        Shortly after going to the doctor my life took a major turn. I had to fly home from school for surgery, and eventually had to quit school altogether. After switching to another school I had to take medical leave. That is currently where I am at.
        Even though there have been a lot of hardships since getting my diagnosis of EDS and other co-morbidities like POTS there have been some good times. I got Secret Agent Puppy, and a lot of new friends that came along with him. I get to volunteer with kids with disabilities, which is what I have always wanted to do. I met my roommate (Tremors), who I never would have met had I not left nursing school.  Everything has its ups and downs, and without EDS I would be a different person.
        It is important to realize that even an invisible disability is disabling.
To all the zebra warriors out there

WE BELIEVE IN YOU

-Nemo and Tremors

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