Some of you may recall that my oldest daughter was diagnosed with Ehlers-Danlos Syndrome (EDS) in July of 2015. This week my two youngest were also diagnosed. I’m now the mama to at least three little zebras.
We knew it was coming. We weren’t shocked or surprised but it feels so official now. It’s a very humbling experience, I can’t say it’s a path I would have chosen for our lives but at least we know where we are and what we’re dealing with.
We have family and church friends that have tirelessly prayed over our family without really understanding what we’re going through. So, here I am writing about this and what it means for our family. I hope it helps you understand our family better and clears up any confusion that you have.
What is Ehlers-Danlos Syndrome?
“Just tell me without all the medical talk.” A family member asked this of me recently. Sometimes when we are diagnosed with something, we forget that at some point in time we also didn’t understand what our condition meant. I actually remember googling, “What is Ehlers-Danlos Syndrome” when it was first suggested to us. I remember reading and being confused at the wide range of symptoms that people can have and all the different types and even thinking, “My skin doesn’t stretch like that. It can’t be EDS!”
So, let me try to explain EDS as simply as I can. Please bear in mine that there are different types of EDS and there may be some people who have a harder time than others with this condition. I will explain some of the things that my girls and I experience.
Now see, EDS is a connective tissue disorder. What’s that mean? Well, our collagen is faulty and collagen is the stuff that helps hold our bodies together. Collagen is one of the most abundant proteins in the body and they’re basically fibers that are braided together in nice tight thick bundles. It supports our skin, organs, bones, muscles and cartilage. Anyone remember the Spiderman movie with Toby Maguire where he stops the train with multiple strands of webbing? Well, the cartilage should be like that–strong and able to hold our bodies together with those tightly woven strands. With EDS, our collagen isn’t in nice little braids. Our collagen is a bit like a Pinterest fail. Instead of nice tight braids, ours are messy, sloppy braids and it doesn’t support our bodies like it should.
This is a genetic disorder and it is not contagious. We were born this way. It’s just how we were formed in our mother’s wombs. It is a syndrome, not a contagious disease.
How are you affected by EDS?
Each person and type will vary but some of the things that we suffer as a family is frequent dislocations and subluxations (partial dislocation) of the fingers, knees and shoulders especially. Muscle spasms and slipping ribs are quite problematic and painful. Abnormal gait (manner of walking), winged scapula (a condition in which the shoulder-blade, or shoulder bone, protrudes from a person’s back in an abnormal position),flat feet, very soft, velvety skin that tears and scars easily and doesn’t hold stitches plagues our household.
In addition there is a suspected Mast Cell issue (unexplained hives and flushing), possible problems with the autonomic nervous system(Dysautonomia), migraines, frequent strep infections and fatigue.
These are examples of a few of the things we deal with on a daily basis. As stated, all families are different and EDS will vary by person and by type. I can’t speak for anyone else, these are just the things that we are dealing with.
Can’t you take vitamins? Is there no cure? Have you tried a gluten-free diet?
We hear this question from family and friends who mean well but this is a condition that is due to a defect in our body. We can’t change how our body chooses to braid our collagen. It’s just our life. Yes, we can do special diets and exercises that will help keep down inflammation and strengthen our bodies but we can’t change our fundamental genetic make up.
How can you help?
Be patient with us. If we’re too tired to come hang out with you or back out at the last-minute, we might be having a hard time or we may be absolutely exhausted from a busy week of therapy and visiting specialists.
Don’t treat us like freaks. Avoid suggesting we join the freak show or the circus as traveling contortionists. Our “abilities” to move our joints in abnormal ways is painful and it weakens our already weak body. When we smile at your joke and joke back, we’re thinking of the tears, the pain and how we ended in the ER or had to lay in bed all weekend because it hurt. Don’t ask us to do tricks–the young ones are eager to please and they’ll pay for showing off later. We are not your entertainment.
Pray for us.
Spread Awareness. It takes two seconds to share articles or memes about EDS on social media. This is an invisible illness and people don’t understand it. So, we need people to step up and talk about this condition.
Why do you call your little one a Zebra?
When a person goes to medical school, they are taught, “When you hear the sound of hooves, think horses, not zebras.” Doctors are taught to look for the simplest explanation for a set of symptoms. While it is true that horses are more common, zebras do exist. For those with a rare or surprising diagnosis, they are that zebra among the horses.
In conclusion: I hope that this helps clear up some of the questions that have been thrown our way in the last months. This is our life now. We aren’t looking for apologies. We just want understanding, support and friendship. Don’t feel sorry for us. Compassion is nice but don’t look at us like this is the end of the world. It isn’t. It’s just our world. Yes, it is one of pain and possible health complications but we don’t wish to borrow bad luck. We’re taking this one day at a time and by putting one (often braced) foot in front of another.
To follow along on our EDS journey, feel free to follow us on facebook. You can find our EDS specific fanpage under My Little Zebras
Until next time,