What is a Zebra, Bendy, or Ehlers Danlos?

People with EDS (Ehlers Danlos Syndrome) sometimes refer to ourselves as EDSers, Bendys, or Zebras. Just like Myasthenia Gravis call themselves snowflakes. So how did EDS become Zebra? Because in medical school, doctors are taught "When you hear the sound of hooves, think horses, not zebras." A zebra is the term used to describe a rare condition or disease. So doctors are taught that the most common conditions are usually the explanation for patients symptoms. Which can be good advice. If you walk in to the doctors office with a cold, he shouldn't expect you have some rare cancer right off the bat. You look for a cold. But!!! Doctors eventually start to expect only common conditions, and forget that rare conditions/ diseases DO actually exist! This makes getting a diagnosis and treatment incredibly difficult for the patient!! So, EDSers have now become none as the medical "zebras".

Now, EDS is not a disorder on it's own, per se. It is actually a group of disorders. There are 6 different types of EDS. But we all just call it EDS unless speaking about our specific problem within our type.

The types of EDS:
   Hypermobility type
   Classical type
   Vascular type
   Kyphoscoliosis type
   Arthrochalasia type
   Dermatosparaxis type.

I have the classical type. Here is a really good link about the different types and what they all entail.
http://www.ednf.org/eds-types

EDS is diagnosed with the Beighton Scale. It is really like a flexibility test. There are 9 points and you must have 5 out of the 9. I scored 9/9. The only time I was ever disappointed to get a 100% on a test.

These are the requirements:
1. Forward flexion of the trunk with knees fully extended so that the palms of the hand rest flat* on the floor – one point
2. Hyperextension of the elbows beyond 10 degrees – one point for each elbow
3. Hyperextension of the knees beyond 10 degrees – one point for each knee
4. Passive apposition of the thumbs to the flexor aspect of the forearm – one point for each hand
5. Passive dorsiflexion of the little fingers beyond 90 degrees – one point for each hand


I remember the first time I read about EDS and thinking how weird it is that people couldn't do these things! I mean, for me, it's normal. If you have EDS, you're born with it. So I have always been able to do these things. They seem normal to me. I never thought about it. It isn't painful to do these things. I didn't have to train or stretch every day to learn to be able to do these things. I just can.

I know I mentioned it doesn't hurt to do these things in the picture. And honestly it doesn't. BUT!!!!!! That DOES NOT!!!! mean there is no pain for EDSers. I have chronic pain. And I have had chronic pain since I was in high school. It took me 8 years to even get a doctor to look at my back. They thought I was exaggerating or looking for attention, or looking for drugs. 8 Years!! And when they finally did look, it was already so damaged, that the only way to fix it now is to have surgery. Spinal surgery. At 25 years old.

Now, this obviously isn't everything. But I wanted to get this out there. Almost every doctor I have met has blown me off. I want others to know there are more like them. I want others to know about EDS!

They say EDS is rare. I don't think this is true. I think it's just rarely diagnosed.

I hope this reaches those that have EDS or think they may and are looking for answers or just someone that understands. I am here. And you are not alone.