May Ehlers Danlos Sydrome Awareness Month

Image of Beighton Score assessment

The main picture above is a picture showing how to test for Ehlers Danlos syndrome, hypermobile type. There is also the Hypermobility Syndromes Association

1 May 2022 – marks the start of Ehlers Danlos Syndrome (EDS) Awareness month. EDS is a very complicated condition and has many comorbidities meaning it can be the cause of other conditions which i shall go into more in other posts. But in simple terms it is a genetic condition that causes collegen to be weaker. Collegen is often described as the glue that holds us together. Ligaments, tendons, blood vessels and skin are all made of collegen, it is also thought that the lining to some organs are also made of collegen.

So most of us have party tricks (although we should not be doing those as it weakens the joints further). But some of us can do extra tricks like wing our scapulas. I can do this both sides at the same time as in the picture below. If i try to demonstrate this even to medical staff i usually get met with err that’s disgusting. So i say no that’s my normal so get over it and help me. The only thing i have found to help with this particular pain (which often feels like an acid bath) is medical cannabis.

A person with Winged Scapulas

This is a genetic condition which was first discovered in 1967. 3 years before i was born yet it took until about a month before my 39th birthday for me to be diagnosed. It can take longer than that for some people as not everyone has symptoms all the time. The only positive that i feel that we have is that we look younger and if we put on weight (at least this is the case for me) we don’t get the excess skin as it shrinks back down with us when we lose weight. But that is the only 2 positives from this condition. Everything else about the condition is that it sucks.

The following picture is a very good representation of what it is to have EDS and that many areas of the body feel displaced a lot of the time.

A person wearing an Ehlers Danlos Syndrome T-Shirt.

I think i will leave it there for this post as i have given you the websites of the 2 main charities that help people with this condition and there is a lot to read.

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