Interview of a EDS Parent

So we all know that our parents know best and if you don’t know that yet, you will. It’s no secret that parents are some of the most important people in a child’s life. Parents are there to kiss all the boo-boos and give hugs when you get straight A’s but have you ever thought about how it makes them feel to do all these things? Take a moment and consider how it must feel for them. Now take a moment and consider a parent of a child with EDS. Do you think it is different? I decided I wanted to know.

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Day 3: How long did it take to get Diagnosed?

Well this one is another question that is hard to answer. I am currently waiting on the final diagnosis. Sounds weird? It really isn’t. Not for someone with EDS. There are many cases of EDS that do not ever get diagnosed. It is really hard to find a doctor that even understands and/or recognizes the signs for Ehlers Danlos. I have been struggling for years to find the help that I need. I started dislocating my right knee around 12 or 13. I was seen for a reoccurring dislocation of an isolated joint. I was not prepared for what was to come. I had three knee surgeries before I was out of high school. I amazed my doctors, because the surgeries did not hold. Then other joints decided to join the party and dislocate as well. Through all of this I still don’t have a piece of paper that says Ehlers-Danlos.

Currently I am looking to go to a geneticist to give me a formal diagnosis. I have been to many different orthopedics, including the one who wrote the text book on knees. (Cool right?) Well even he told me that it was probably EDS but then he wouldn’t actually diagnose it. I mean how hard is it to write down or type in 20 letters divided by a dash and space. Here I’ll show you EHLERS-DANLOS SYNDROME. But do not get my wrong, I loved Doctor G. He was amazing. I just wish he could have given me the diagnosis I need. Oh well, I know what I have and how to deal with it (for the most part). I also know that the people in my life understand that I struggle and need help sometimes but we can all laugh about the silly things. Im going to end this post with something I said to a friend just last night. D. said that it perfectly described me and we laughed, probably too much.

I am basically a real life Mrs. Potato Head.

This is my world and I enjoy every moment of it.