Ehlers Danlos Syndrome

May is Ehlers Danlos Syndrome awareness month! It is crazy to think that a year ago, I had never even heard of it! Many people never have. If you have any questions about EDS, I’d be happy to try to answer them. Feel free to drop a comment. πŸ˜‰

Because EDS is rare, many people have never heard of it. Including those in the medical field! That coupled with the fact that it presents differently in every person makes it very difficult to diagnose and treat! So, I am on a mission to make EDS known so that maybe more people can be helped, cared for, and treated.

The Ehlers Danlos Syndromes are a group of inherited connective tissue disorders. Connective tissue is in much of the body, so EDS can cause a variety of different symptoms. Anything ranging from random allergic reactions, stomach pain and nausea, dislocations, dizziness, vessel/organ rupture, scoliosis, and pain. But thankfully, just because it can cause all those things, it does not mean that it will for every person with EDS. I love a saying that goes, “If you can’t connect the issues, think connective tissues.”

Connective tissue is pretty much the glue that holds our bodies together, so sometimes EDS causes major stability issues! Our joints easily come out of the socket because the connective tissue is so stretched. Hypermobility is a major symptom from overstretched connective tissue. Braces, splints, and tape are often used to help stabilize “angry” joints. Everyone is different, but so far I have had eight different joints come out of socket!

Sometimes I feel like EDS has wreaked havoc on my life. But really, it has wreaked havoc on my plans for my life. This was what my life was meant to be all along. A beautiful, crazy, God-organized mess, that was meant to be my story all along. The Lord is using this to make me exactly who He meant for me to be. He makes no mistakes.

While EDS has its highs and lows, it does not go away. It is chronic. And often that makes it very discouraging, as with any chronic illness. But it has its bright sides. It has taught me so many things! We’ve also just learned to laugh. Why? Because it is gonna be ok. No matter what. God has got this. And laughter is the best medicine! So, want to know some of my funniest injuries caused by EDS? πŸ˜‰ Last night, I laughed and popped a rib out! One time I sneezed and popped my hip out! Pretty crazy right?!? I also have an amazing T-shirt that says “I’ve got issues with my tissues,” yup, it is totally my favorite T-shirt! Another bright side- I have the best support group! This journey has been hard and brought many feelings, but never once have I felt alone. I am so thankful for all of you that have prayed and come alongside us through this! Thank you! Happy EDS awareness month!


This is my journey as I try to live life for the glory of the Lord with EDS!

4 thoughts on “Ehlers Danlos Syndrome

  1. Honey He might have changed your plans for your life to fit His plans but you are so very beautiful,smart,and strong that I know no matter what His plan is for your life yall will rock it together. I love you….see you soon Renee


  2. Praying for you each and every day! I am so grateful that you are finding relief, and I am so proud of you for continuing with your piano through all of this. I can see the joy that it brings you, and I would never want you to have to give that up. πŸ’•


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