EDS is more than just being bendy.
May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) awareness month.
Many with POTS (including myself) have the trifecta: POTS, EDS, and MCAS.
What is EDS exactly?
EDS is a group of inherited conditions that affect the body's connective tissue. These conditions are caused by gene mutations that make the connective tissue weaker. Connective tissue supports the skin, ligaments, blood vessels, internal organs, and tendons.
There are 13 different kinds of EDS, and most are very rare. Hypermobile EDS is the most common type.
EDS symptoms may include:
- Joint hypermobility - (see picture)
- Stretchy skin
- Joint pain and clicking joints
- Extreme fatigue
- Orthostatic tachycardia
- Pelvic and bladder dysfunction
- Digestive problems
- Problems with internal organs, such as mitral valve prolapse
- Fragile skin that breaks or bruises easily (see picture)
As you've probably realized, quite a few of the symptoms between EDS and POTS correlate.
So, when I got diagnosed with EDS, I wondered how many of these symptoms (mostly the fatigue and gut issues) would get better. Knowing that it’s genetic, I wondered: “am I doomed to have these symptoms forever?”
The good news is that most of the symptoms have disappeared. Of course, my joints still crack; I'm still bendy; and I still bruise easily. However, that’s just how my body works.
As EDS cannot be “cured”, the joints are what I have to continuously watch out for. Listening to my body has been crucial as I explore new activities and methods to move my body while trying not to cause too much damage. It's a work in progress.
Do you have the trifecta? How do you cope with it? Let me know in the comments below.
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