Tag: EDS

Ehlers-Danlos Syndrome Awareness Month: My Life as a Zebra

May is Ehlers-Danlos Syndrome Awareness month, and this is one of the rare diseases I am diagnosed with. So I’m taking a moment to depart from the topic of corn allergy to give you some info about it.

eds awareness

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. EDS causes weak or defective collagen, which can affect many systems within the body- basically anywhere you have connective tissue. There are many types of EDS, and all of them involve joint hypermobility (double-jointedness), fragile tissue, and fragile/easily-bruised skin. Some types of EDS such as Vascular Type can cause arterial or organ rupture because the connective tissue of the organs and veins are weak.

There are 15 types of EDS, which you can learn about in detail from the Ehlers-Danlos Society.

The type I have is Hypermobile Type, which is the most common type. As of 2017, there is also a related condition, Hypermobility Spectrum Disorder, which is even more common than hypermobile type EDS.

Two things I would like to point out about hypermobility:

1) It is possible to be hypermobile without being flexible. 
Hypermobility has to do with how well your ligaments hold your bones together, while flexibility depends on the ability of your muscles to stretch. In many people, especially older hypermobile people, you may lose flexibility due to joint damage or muscle tension as the muscles try to hold the loose joints together.  Here’s a writeup from Yoga Dork that I think explains the difference well.

2) It is also possible to be hypermobile without having adverse symptoms from it. 
I often feel like this just means you don’t have adverse effects “yet” but I can allow for other viewpoints.

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