Have you noticed zebras or zebra stripes popping up in your social media feed recently? Did you know that the zebra represents a connective tissue disorder called Ehlers-Danlos Syndrome or EDS? May is national EDS awareness month! Our home is zebra print from top to bottom.
What is EDS?
Technical definition, Ehlers-Danlos syndrome (EDS) is an inherited disorder that causes defects in the body’s collagen. There are 6 types of EDS of which all have the symptoms of hyper mobile joints, easy bruising and soft stretchy skin. The 3 most common types range from Hypermobile, primarily in the joints to Vascular, effecting the arteries.
Basically, EDS bodies, do wonky things. Joints are lose, making bodies operate like a marionette at times. Bruises can come from the most mundane of tasks. In addition, there are co-diagnosis that go along with EDS. They can effect anything from teeth to toes and everything inbetween.
Our EDS Story
Our introduction to Ehlers-Danlos came two years ago. We went to a routine check-up and the doctor was really concerned about some joint issues. Next thing we knew, we were headed for lab work and had a referral into Cincinnati Children’s Hospital, Rheumatology Department. My head was spinning! They suspected she had rheumatoid arthritis (RA) at the tender age of 4.
By the time her appointment came, her symptoms (joint swelling and discoloration) vanished and we were told to follow up if they return. We left with a giant Phew and the best medical advice ever. The doctor told us “in the future, start photographing visual symptoms on your cell phone. That way if they change, we have more to work with.” I felt kind of dumb as a photographer, and parent, I didn’t think of this. Trust me when I say DO THIS! Photo bad cuts, bumps, bites on your phone because it can be SO helpful to medical staff.
Two years later her symptoms were back on different joints and way worse than before. We busted out cell phones and did daily foot photos. Cincinnati Children’s was AMAZING. We were seeing a practitioner dearly loved in the juvenile arthritis community. I knew she would gently give us the blow of a RA diagnosis to explain our daughter’s chronic pain at the age of 6. Instead during the exam we were hit with terms like Chilblains Disease, hyper-mobile joints, genetics consult and Ehlers-Danlos..can be vascular. And with a stern warning not to Google it because it can be scary if it affects the heart, we were sent for more labs.
It took us 5 months to get into the Genetics EDS Clinic at Cincinnati Children’s. As I sat there 8 months pregnant with daughter #3, my oldest was diagnosed with EDS of which I, her mother, am the carrier. All of our female children will have a 50% chance of having EDS. [quote]As I read the stacks of literature they gave us, I was raw with emotion.[/quote] I was crying for my daughter, crying that I gave it to her (and probably our 2 other daughters), and yet crying with joy because here on these sheets of paper, explained my life to a T!
Why the zebra?
My daughter says it’s because Zebras confuse predators by running around much like EDS symptoms. If she only knew how wise she is. In medical school they say, “If you hear a hoof beat, go with a horse not a zebra.” Meaning, don’t get all Dr. House and try to find some crazy illness for the common cold. Which is true the majority of the time. With EDS, it’s a different beast much like many “hidden” illnesses. There are symptoms and clues, but it’s not hard lined like a broken bone. Plus, like a zebra’s stripes, each person with EDS will have different symptoms and sister diagnosis.
So I asked my daughter and a few other EDS’rs what the most important thing you want the general public to know about EDS. Here is what they said…
From our 8 year old with EDS
• Your legs hurt when you run (or walk) for a while
• It’s hard to do sports
• Sometimes I’m cranky because of pain
From Moms of EDS Children
• It’s frustrating to figure the system
• You’re consumed (and frustrated) with teaching your child to cope with pain
• You are an insane advocate for your child that can go from sweet to Momma Bear in 2 seconds flat
• Waiting 5-9 months for Dr’s appointments while your child is showing new symptoms, will drive you nuts
• Don’t judge my child’s attitude, because you can’t see their pain
From Adults with EDS
• Everyday and every patient is totally different…don’t compare us
• Friends give up on you hanging out because you’ve had a rough patch. We still want to be invited; we just may not always feel up to it
• We ARE NOT drug seekers or lazy. Our pain is real, just not always visible
• Our injuries and symptoms are real
One day I hope my daughter realizes how much of a hero she is to me as an EDS champion. She has put up with long Dr’s visits, labs and physical therapy she hates. One day in the car she asked me if there is a cure. I choked back tears telling her “No, but you will be okay and can do almost anything anyone else can.” She then asked, “Can we fundraise for one? Like a bake sale or walk-a-thon?” Like I said, she is a champion!!
To learn more about EDS check out these resources:
Cincinnati Children’s Hospital
http://www.cincinnatichildrens.org/health/e/eds/
The Ehlers-Danlos National Foundation
www.ednf.org
I’m glad you shared your story Mama Bear! Rock on.
I really especially love the tips from your daughter, she sounds like a pretty cool cat.
My husband was actually diagnosed a few years ago with a 1-per-million incidence adrenal tumor and spent several days in the ICU when we found out. (Thankfully able to be removed and was benign…!!!!) He was also a ZEBRA! So while he may not have EDS, he sure does have his stripes. Again, thanks for sharing!
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