It's May already? What does that mean?

Hey my lovely friends, family, and fellow zebras!
May is here and so is Ehlers-Danlos Syndrome Awareness Month!  I'm excited that it's here because this is an issue that needs to be talked about.  In honor of EDS Awareness month, I wanted to post some random facts for everyone. :)

1. EDS is genetic, meaning it's inherited.  If a parent has EDS, there is a 50% chance that their children will have it.

2.  Each EDS patient is different.  Although different types cannot be passed down and you cannot chance to a different type, the severity of the symptoms will vary from person to person.

3.  There are 3 main types of EDS.  The types are classical, vascular and hypermobile. 

4. The hypermobile type cause the most pain out of the 3 types.

5.  Patients with the vascular type usually don't live past the age of 30.

6.  There is no cure for EDS.  There isn't a very good treatment plan either.  As EDS patients, we are forced to find the best way to treat our specific symptoms.  

7.  Pain and flares are VERY unpredictable.  We can feel great one minute and in horrible pain the next.

8. Due to adrenaline issues, falling asleep can be really hard for EDS patients.  Once we finally fall asleep, pain wakes us up, or adrenaline causes a shallow, vivid dream filled sleep.

These adrenaline issues are also why we are more prone to anxiety and panic attacks. We are also often up with painsomnia - when we are in too much pain to sleep.

9. EDS patients have enough collagen, it just isn't as strong as it's supposed to be. Your collagen is like a rubber band and mine is like gum.  Mine never is strong enough and your is super strong,

10.  EDS patients have super amazingly soft skin that is described by doctors as velvetly soft! 

11.  There is something called "brain fog" that is very common.  It is probably caused by poor supply of blood to the brain.  It causes forgetfulness, loss of attention, inability to articulate what is on our minds, fatigue, and confusion.  It isn't constant and we hate it.

12. The zebra is our mascot.  There is a saying that goes, "When you hear hoof beats, think horses, not zebras."  This is largely why we get misdiagnosed so many times for years.  Doctors hear our symptoms and diagnose us with something more common, like just having bad posture or being overweight.  The zebra is rare and is usually not the answer, but is for us.

13. ANY joint can dislocate and usually does at least once in our lives. 

14. The Spoon Theory is a theory created by a Lupus patient who was trying to explain fatigue and chronic illness to her friend.  She was out to eat with her friend and, when asked about fatigue, she grabbed all the spoons she could find and told her friend to explain what she does every day.  For each activity, a certain amount of spoons were taken from her friend.  Each spoon counted as energy.  To understand the spoon theory more, go to http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

15.  When we tell a doctor we have a diagnosis of Ehlers-Danlos Syndrome, it is really common to hear them say, "What?" or "I have never seen a patient with that before.  You are my first."   Some will even admit "I've never heard of that. Can you spell it for me?"  After which we usually wait while they google it.

I'll try to post more facts later.  I just wanted to give everyone a few things to read about EDS.  Stay strong and give gentle hugs!

Carley