This page is fairly new.  In common practice the bulk of this page will be about spreading awareness and providing information for EDSers (as I call them).  I have very strong thoughts tonight about EDS that I would like to express. 

Last night at our local group meeting I heard there is another EDS page on my space.  I was pleased to find that there is actually more than one!  As I read through EDSers stories, I felt such a mix of emotions.  We all have such similar stories about our diagnosis.  To sum it up: pain, confusion, misdiagnosis... more pain, more confusion, misdaignosis... extreme pain, frustration, anger, resentment, depression, and finally diagnosis. Your feeling at diagnosis may be different than my own.  After everything I'd been through, for me it was relief. Finally I had been given an answer!

After reading these stories I felt a moment of despair.  Why do we have to go through this? Why are we doubted?   Why doesn't anyone seem to listen?  So many people are still undiagnosed and going through the same things we did.  When will it end?

"God!" I exclaimed out loud. "What?" my husband asked. "So many EDSers with the same story! I don't think we'll  see an end to this in my life time."  He paused and said, "I think we will."

It was in that moment he gave me hope.  He lifted me up when I needed it to continue working hard to make a difference in this world for EDSers.  I love him so much for his compassion and support through this disorder.

I don't know if anyone will even read this blog, but I hope if you do, you will feel some of my passion and hope.  I realized things are getting better.  This next story is very personal and very difficult to share. If it gives hope to other EDSers it's worth sharing.

My grandma who passed about ten years ago had EDS like my mom and me.  Of course, hers was never diagnosed.  In fact, as a young woman she was actually institutionalized and considered mentally ill because she felt pain that "wasn't there."  She learned to suppress her feelings and found ways to "self-medicate."  She went through so many botched surgeries in her lifetime.  Grnadma died of cancer in the end.  She was a fascinating woman with an amazing energy I admire to this day.  As horrifying as many of our stories are, most are not as severe as hers.

Thank God or do what ever you believe in for the world we live in today.  It may not be perfect or even great, but it IS getting better. 

I BELIEVE I WILL HELP LEAVE THIS WORLD BETTER THAN WHEN I CAME INTO IT!

Do you?

Leave me a comment if you read this!

Meghan

President

Phoenix Metro Group

Ehlers-Danlos National Foundation