Happy Ehlers-Danlos Syndrome Awareness Month!

* I have stripes, your argument is invalid! I really should’ve posted this on the 1st, but let’s pretend I was super busy and had absolutely no time.

So, as you’ve probably gathered, May is awareness month for EDS.  Which is very exciting.  Last year I didn’t know I had it, but made a special profile picture on facebook just for the occasion in support of my best friend who suffers from the condition.  (Her second novel, Najee: Awakening is out!  Go buy it!)

It was after that that my ‘Hypermobility Syndrome’ began to act up again, and it was through Sarah that I understood that it’s just the same thing as Ehlers-Danlos type 3.  I’m so blessed that my closest friend is a wealth of knowledge on the subject, having lived with the symptoms almost her entire life.  (We somehow always wind up getting the same afflictions at the same time — from flares to colds to eye stys, go figure — and so she finds pleasure in blaming me for the EDS seeing as I was born first).

Ehlers–Danlos syndrome (EDS) is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes.

I really dislike complaining, but the EDS has been really bad lately.  As you all know, we’re trying to sell the house, and when we have a showing, the place turns into a madhouse as everyone frantically scrambles to make everything look presentable and sellable.  And I swear, every time we have a showing the EDS gets worse.  I’ll just be starting to heal from that when we have another showing.  And EDS is famous for its unpredictability — logistically, I could be fine next week.  (It probably won’t happen, but one never knows with EDS).  But it’s been misbehaving something fierce.  The pain is everywhere, and there are times that come alarmingly often when my back will hurt so badly that I can’t breathe.  I count down the hours until I can take more medicine.  Typing, sitting, lying down, walking, breathing … it all has the potential to hurt me.  And dang, it often does.

It scares me.  When I was fifteen it all began, primarily in my wrists.  I was diagnosed with Hypermobility Syndrome, but it wasn’t until this past year that the disease made a full comeback.  The pain was all but gone … until it slowly began creeping up on me again.  My back was hit first.  Then my knees.  My shoulders.  I was working quite a lot at Subway, I loved my job despite how tired it made me.  Suddenly I couldn’t do it anymore.  The pain was getting so intense, and I knew that if I continued it would get to a point where I couldn’t work at all.

Changes | Community Post: 31 Random Facts About Ehlers-Danlos Syndrome  We never know when or where we will be in sudden excruciating pain.

This was last December.  It’s gone through phases, as EDS is wont to do, but the past two/three weeks it’s been like a leering face in the window of my future, mocking me and hurting me.

I came to the conclusion that I might have to get a wheelchair — I told my parents and now it’s happening.  I won’t usually need it at home, but it’ll be so nice to go through Wal-Mart again.  Explore the world.  Maybe even go on a proselytizing mission instead of a Church Service one.

Motorized Wheelchair

We went to go see the Avengers yesterday, and as I watched the film, it made me sad that I could never even attempt to do all the stunts they do.  I grew up a dancer, and now I can’t even clean my room without paying a price.

I honestly didn’t mean for this to be a depressing page on this condition.  I meant for it to be a message of hope.  That’s what having a month dedicated to it is all about.  The more awareness there is, the more chance there is of someone finding a cure.  Or even simply that others will understand.  And y’know, we need that.  Us ‘zebra warriors’ need the support of the common people.  We don’t want to be looked down on for taking a handicapped parking space (yeah, my mother’s getting a sticker for the car despite all my arguments).  I’m young, but yes, I need that motorized cart at the store.  When I ask to sit down or if you can open my water bottle for me, it’s not because I want attention — it’s because I’m in pain and I don’t want any more.  And I have hope that together we can fix this.  That if we all come together and support one another, no matter what problems we face, mental, physical, or anything else, we will be made stronger, happier, and fuller.




2 thoughts on “Happy Ehlers-Danlos Syndrome Awareness Month!

  1. Stay strong, girl! You’re awesome. You can accomplish anything. You… have a fun face! XD (I felt like I needed a third thing there to round things out, and I’m really tired right now.)
    Happy EDS Awareness Month!


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