Styling Ehlers Danlos

 

 

Bodysuit: Forever 21
Shorts: Express
Photo Credit: Daishawn Hayes (Click here to see his work)

 

If you asked my friends to describe me they would say loud, confident, energetic… hopefully, they would say I was funny :), but one word I know that would not used to describe me is sick.

When I was 16 years old I was diagnosed with Ehlers-Danlos Syndrome (EDS). May is Ehlers Danlos Awareness Month, so after encouragement from a friend of mine who also has EDS, I decided to do a post about it. EDS is a connective tissue disorder that is caused by a defect in collagen. Collagen is the most abundant protein in the human body. All tissues of the body including ligaments, bones, tendons, muscles, skin, blood vessels, gums, eyes and large organs rely on collagen for their strength. Collagen is used to hold your bones together, but since mine is deficient- my muscle and ligaments have to hold my body together (which is not what they were designed to do!). Because of this, my bones are constantly a little shaky. At any given moment my elbow, knee cap, ankle or any given bone can pop out of place without warning. My body has to work harder than the average persons because it requires much more energy to try to “hold me together”. I have to plan out every aspect of my week, if I want to be able to go out and have fun on the weekends, I know that I will have to spend Sunday- Thursday resting up at night. I also have to find time for my physical therapy program that I do 4-5x a week. This is something that I will have to navigate for the rest of my life, as well as chronic pain. I have good days and bad days but I make the most of every day. EDS is not something I really talk about and I do not let it define me.

One of my goals with my blog is to inspire people to feel confident in themselves. Somedays I may be having a bad pain day, but by putting on something fun and spunky it can give me the confidence I need to make it through the day.

XO
-$arah

To learn more about Ehlers Danlos Syndrome click here.

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