Monday, August 24, 2015

EDS: Ehlers Danlos Syndrome-What you talkin' about Willis?

Both my husband and son have been diagnosed with a once thought rare condition called Ehlers Danlos Syndrome or EDS for short. I have to share this story because MANY people have it and do not even know it. They need to know what it is since it can be debilitating and even deadly...

 Around the age of four, I noticed my son's ankles. They drooped in towards each other. It looked bizarro, and wrong, so at age 6, I finally took him to the doctor. And she referred him to a pediatric orthopedic. I figured this doctor would look at his ankles, measure his height, ya know, go through the typical procedures and routine. Then, offer us an explanation and a solution. Uh, nope. Bigger deal than weird ankles.

She looked at him from head to toe. Asked a billion questions and then preceded to tell me, "Your son has Scolios and I am recommending he be checked by a geneticist for EDS." ...Silence, confusion...huh? Say what? 
 She let me know (very respectfully and gently) what in the world EDS was and the concerns and the best place to get information. We took an x-ray of his back and it confirmed the Scolios. We had to go get his feet molded for inserts he will have to wear for the rest of his life. 

Before I tell you what EDS is in case you don't know, I will be honest...I was shocked, wanted to panic/worry, and melt into a puddle on the floor, but I kept it together long enough to break down a bit at home. Then, after much prayer and with renewed strength/faith in the Lord, I was on a mission to help my sweet boy!

Ehlers Danlos Syndrome is a genetically inherited disease that effects all connective tissues, think joints/tendons, etc. Those who have the disease don't produce collagen so their joints are very loose. There are 6 major types and my son and husband (who passed on the syndrome) have Hyper-mobility Type. This means they can do cool party tricks with their body (think double-jointed which is actually what EDS is). 
On a serious note, it really means a life time of fighting your body! It can cause random pain, chronic pain, dislocations, trapped and or stretched nerves, sprains/strains and muscle tears as well as other physical problems to the point of not being able to use parts of their bodies. One can injure themselves just through ordinary activities.  EDS has been called the invisible disease and here is why...

What is really hard is that those with EDS look normal and healthy on the outside so people have acted like my family is making this up and many doctors have misdiagnosed my husband, ignored the diagnosis or worse told us it was "all in our heads."

However, many people have believed us and been supportive and that is huge when you are facing something daunting like a diagnosis.  
Sometimes it is hard to swallow the blows of living in a fallen, imperfect world, but I am finding that as I have placed this crazy EDS in God's hands, I have been better at supporting, advocating and being compassionate towards my husband and son. This answer, although not one any of us want, has brought so much understanding to past peculiar injuries and physical problems my husband has had in the past. 

I know God is carrying my family gently through each day, week and month that EDS makes itself known that it is still there. The greatest reaction I can have is giving every part of this to our Lord Jesus and in return he meets me right where I am...and yet, where I am moves and respect, my reverie, my understanding who he really is grows.
To learn more about Ehlers Danlos Syndrom go to 
and or

Happily linking up with Jen and other sweet sisters at



  1. I love posts that bring our awareness to diseases like this, especially those that don't always have physical signs. You never know who is out there, looking for information and someone who has been through this before. If you'd like to share at SDG Connections, let me know!

  2. I also want to say that I am so sorry that y'all are going through this, but I am grateful you now have some answers to your husband's issues. Sometime the unknown can be so hard. Praying for your family and grateful for the support you have found.


Share your thoughts with me. I would love to hear from you.

Related Posts Plugin for WordPress, Blogger...