You Might Have Ehlers-Danlos Syndrome And Not Even Know It.

Ehlers-Danlos Syndrome, or EDS, is a group of inherited disorders that affect the connective tissues of the body. Feel free to read this post, or watch my video about what EDS is here: https://www.youtube.com/watch?v=1a5g-L5VxIU

The connective tissues are made up of a protein called collagen, and the collagen in people with EDS  doesn’t work right. Most of your body has collagen in it, the skin, tendons, ligaments, organs, nerves, arteries, veins, your eyeballs... So if the collagen, which is the glue that holds all of these tissues together, doesn’t form properly, people with EDS can have lots of problems with their joints, blood clotting, digestion, nerve pain, vision, ‘brain fog, emotional or mental problems...and the list goes on and on.

In early 2017, a new international classification of EDS was created that includes at lease 13 subtypes of the syndrome.

The most common form of EDS is, Hypermobile Ehlers-Danlos Syndrome, or hEDS,  Since there is no genetic testing that can be done for this type of EDS, you will have to depend on a doctor to diagnose you or you may have to diagnose yourself by using the diagnostic criteria linked below. Finding a doctor isn’t easy to do because there are very few of them that even know what EDS is. 

Two other forms of EDS, which are a little less common than hEDS are: Classic EDS and  Vascular EDS. These have some very serious complications such as, spontaneous organ rupture in vEDS, so getting tested to see what type you have is very important. There is genetic testing that can be done for both Classic and Vascular EDS, so that’s a good thing.

Every type of EDS has the same problem; bad collagen. Since collagen is the ‘glue’ that holds your body together and isn’t produced correctly, the body has structural problems. The Ehlers Danlos Society says that having faulty collagen is like “building a house with bad materials, cheap nails or only half the wood required. If you do that, problems will arise. Some problems are more likely to show up than others, but because the bad or missing materials are everywhere and not necessarily visible, one can be surprised where some problems occur.”

Just like that analogy, people with EDS have lots of different connective tissue problems, and they’re not all the same. Some might have shoulder or hip dislocations, while others have severe digestion issues, rib subluxations that make you feel like you’re having a heart attack or loose joints that hurt all the time. There is almost no limit to the problems bad collagen can cause and that’s part of the reason it’s so hard for doctors to diagnose.

There’s a saying that all medical students learn, “When you hear hoofbeats, think horses, not zebras”. This is so they can prevent doctors from making an incorrect diagnosis of a rare disease. A medical ‘zebra’ is rare, but the problem with EDS is that it mimics things like fibromyalgia, chronic fatigue, and IBS and that makes it hard to diagnose.

The zebra has become the mascot for EDS because doctors think it’s rare. Some doctors that are familiar with EDS though, actually think it’s very common, it’s just misdiagnosed. These doctors say that close to 1 out of 100 people actually have EDS.

My approach to treatment, because there is not a cure, is to deal with the acute symptoms using Homeopathy. I recommend finding a good Homeopath in your area who is knowledgable about connective tissue disorders.

And just like every zebra has a different stripe pattern, every person with EDS has different symptoms. Some of the typical hypermobile joints are shown in the pictures below. If you or someone you know can do these things, you may want to read more about EDS and all of the different symptoms, or watch the video I made about EDS, I’ve posted a few links for you below. 

Links:

The Ehlers Danlos Society:  https://ehlers-danlos.com/what-is-eds/

2017 International Classification of the Ehlers-Danlos Syndromes: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552/full

My  YouTube Video about EDS: https://www.youtube.com/watch?v=1a5g-L5VxIU&t=18s