40 Years to Zebra

In honor of EDS awareness month, I wanted to share my EDS story.

40 Years to Zebra Cindy B's Story of Diagnosis

40 Years to Zebra

It actually starts years, well decades, before I even knew I had EDS or what that word even was.

I have been sick since birth.

I was able to find records that show my hips popping out at 6 months and all sorts of notes about checking left arm, right leg, etc.

Around that time I also started having other issues but no one connected that to my hips.

When I was 5, I had my first surgery for a hernia that I either gave myself or it just came up?

I was around 7 when I started having other issues with my other parts of my GI system including my colon, bladder, kidneys, and stomach.

Around 9 is when I almost died from toxic shock the first time and then after that there are a ton of admissions, every test under the sun.  My whole GI system shut down on me and my kidneys and bladder was a big issue.  I could not empty my own bladder so I would have to go get a cath and then my kidneys and bladder would get infected bad.  All while my colon and stomach were shutting down and not moving.

I had been in the ER at least once a month if not more and had almost died from toxic shock multiples times by my teens and that is when I started getting bad back pain, that was explained away as my kidneys were so bad but I also started “accidentally” hurting myself a lot and bruising like crazy.

I had eating issues where it did not take much to get me full but that was also do to my GI system , so I resorted back to baby food  even in my teens.  All through gym class, I would end up in the ER at least a few times a month if not for my internal organs but now my joints.

My body knew something was going on.

 I was getting hurt way to0 much and too severe for the things causing it.

I was also told over and over again that I had bad scoliosis, but back then there were no braces except the big metal ones or like a turtle shell and even those options were not discussed as I was so sick with my internal issues.ujy

We never had time to focus on my back and my joints  and no one ever thought to put all of this together!

As I got older and after my kids were born, it got worse and worse and worse.

I was getting a ton of bladder and kidney infections as well as kidney stones and UTIs.

It got to the point where my spine was destroyed.  When I say destroyed, I mean five ruptured disc, scoliosis, spinal stenosis, degenerative disc disease so severe that ALL my collagen in my lumbar is gone.  I have bone spurs on my spine, a huge syrinx in my spinal cord, and four failed back surgeries.  Plus a Chiari one malformation, tethered cord and syringomyelia that no doctor ever told me about until recently and the EDS docs saw it.  I had no idea about the latter part, the Chiari, etc…  until after I found out I had EDS!

The last thing they wanted to do was a five level fusion with a cage and Scoliosis bars, rods and screws.  My whole lumbar spine.

And a 5% chance that it WOULD work and not paralyze me.

I said, “ No way, I will deal with the pain.”

I had to give up a great job and I thought that I just had a bad back and a messed up stomach.

 I was wrong. 

A few years ago I started to get sick.

I started to get a lot of pain when I ate and I would get bloated and nauseous from eating.

I started to get dizzy and feel weird when I stood up, etc.

I went to the ER when I found out I had vertigo and my gallbladder needed to come out, but before they took my gallbladder out they wanted to do more test to see if that was it.

In the testing it was discovered that I have gastroparesis, which is why I can’t eat.

We took the gallbladder and no better

I never got better.

I could not eat and I was losing weight like crazy so then they tried to cut my pylorus muscle to allow more food to get through but again, I still can’t eat.

I was online one day and my friend Sarah Jill and I were talking.  She asked me after I told her about my back and my GP if I have ever heard of EDS?  I had not, so I looked it up and it was answers.  It was all the answers.  I remember there was a list of like 30 things and I had almost all of them.

I had a pain doctor so I went to him to discuss it.  He tested me and said, “Yes, I think that is what is wrong.” and he had thought it for a while.  Especially with my vertigo and stomach stuff but even he thought it was too rare to be the case.

Then I went to genetics to confirm it.  I was told I had Ehlers Danlos Syndrome (hypermobile and classical types).  It is a genetic disorder that effects the collagen in your body so that was why I have been sick forever and that’s why ALL the collagen in my spine is just being eaten up.

There is no cure and it is progressive, however I just try to take it day by day.

 I still can’t eat but I try every day.  For now I live on Ensure and soup.

I have a lot of pain associated with EDS.  My joints dislocate more and more.  They will pop and crack as well as shift.

I have been affected by dysautonomia including P.O.T.S. and GP which basically effects your whole autonomic nervous system.

I am hoping this may help others and it is why I am sharing my story of how I found out I had EDS.

If not for Facebook and Sarah I still would not know, and not be able to help my kids.

My son started to show signs and now he is on beta blockers for P.OT.S.

My oldest is now having joint issues and my middle has been diagnosed with hypermobile joints however not full EDS .  Which I pray does not change!

If you have any of these things, you could be a zebra too and you should go to genetics and ask to be tested for EDS.  It takes years to put these puzzle pieces together.

Hopefully by sharing my story, another child will not have to suffer that long and when all the doctors are left scratching their heads, someone may say, it could be EDS!

Cindy B.

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