Ehlers Danlos Syndrome for Dummies

So I’ve decided to take a few moments and try to explain Ehlers Danlos Syndrome Hypermobility Type. I’m not sure how well I’m going to do, but I’m going to give it my best shot.

I got this from Wikipedia:

Affects 1 in 10,000 to 15,000 and is caused by an autosomal dominant or autosomal recessive mechanism. Joint hypermobility is the hallmark of this type, with less severe skin manifestations. Joint instability and chronic musculoskeletal pain are particularly prominent in this type. Patients with the Hypermobility Type experience frequent joint dislocations and subluxations (partial/incomplete dislocations), with or without trauma. As a result of dislocations and subluxations, pain is a common, severe, and a lifelong symptom of this type. Additionally, osteoarthritis is common, and many get it much earlier in life than expected.^[18]

I don’t really know anything about the genes and stuff that are affected I’m just trying to explain how it all works for.

So for those of you who don’t know anything about EDS at all, it’s a connective tissue disorder. It affects the collagen in the body, and collagen is basically the body’s super glue.

All types of EDS are hypermobile to some degree as far as I’m aware. (If I’m wrong someone please correct me.) But with the hypermobile type of EDS we are usually extremely flexible. And it can affect the small joints like finger joints or big joints like shoulders and knees.  Our skin is stretchy too but not as much so as with other types of EDS. A lot of us can bend our body parts in ways that normal people can’t comprehend.

And speaking for myself, I don’t know about anyone else I can’t comprehend how people who aren’t hyper flexible function. You can’t scratch your own backs, you sit stiffly almost. It’s just difficult for me to comprehend doing tasks with a limited range of motion.

Now back on task, as you read above from Wikipedia people with hypermobility type have joint instability. This isn’t true for everyone; there are people with milder forms of this disease that have more stabile joints. You have the relatively stable people, then you have the people like me and then people that need to use wheelchairs and things like that.

The people like me are the middle of the road kind of people, we don’t need wheelchairs (yet) but we are pretty affected by this disease. Generally we have a splint for almost every body part. For example I have ankle air casts, knee braces, wrist braces, finger splints and silver ring splints for my thumbs.

Now if you’ve ever had a dislocation I want you to take a moment and remember that pain. If you’ve never dislocated something, try to imagine a searing, ripping, sharp pain in your shoulder. Now imagine that happening everyday, in any body part for almost any reason. It’s absolutely horrible to have that happen day after day. And you can’t control it no matter how hard you try. If you have a loved one with EDS they might be going through this horrible pain. Be kind; try to understand their pain. Talk to them about their symptoms and what they go through. The best gift you can give anyone with a chronic illness is kindness, understanding and the ability to learn about their illness.

If you’re reading this because someone you know has EDS then it’s a wonderful start. I’m proud of you for wanting to learn because most people don’t want to learn. They want to just brush chronic illness under a rug and try to not acknowledge it.

By now, you’ve probably noticed that people with EDS can’t exactly run to the hospital every time you dislocate or sublux (partially dislocate) something. We’ve learned to put our own dislocations back, which I will admit is somewhat dangerous and exceedingly painful. There’s a risk for nerve and blood vessel damage as well as the obvious part of, you might not have put your limb back correctly. It’s a skill that doctors most likely prefer that people with EDS don’t do but we tend to ignore them.

Now you’ve learned that our joints dislocate and move around in strange ways. Take this knowledge and try to understand what happens to our body’s everyday. We are in so much pain everyday that it’s often hard for us to describe it, even to ourselves. We just know it hurts and we don’t want it to, we don’t say things about our pain because we don’t want to burden the people that take care of us. There are a lot of things that people with EDS don’t say about their pain.

I think that the conditions that go along with the EDS are almost worse than EDS itself. Pots, Dysautonomia, IBS, Syncope (fainting), people with other forms of EDS could have life threatening heart conditions. Along with things such as scoliosis, trouble healing after surgeries and excessive bruising.

I hope this made EDS a little easier to understand for those of you that don’t know what it is. Or those of you that have a family member with EDS, but they don’t really want to talk about their condition. Just remember to be kind and try to understand what they’re going through, show them that you are trying.