It’s May, and Ehlers Danlos Awareness Month. As I’m ridiculously busy this month I’ll not write a new post on the subject, but instead direct your attention to this one from 2013.
This year, I’m taking part in the HMSA’s “Do A Mile for EDS” challenge. I’ll be swimming my miles, so there won’t be very many of them but I promise they are absolutely exhausting. If you’d like to help you can visit my page here: http://uk.virginmoneygiving.com/Blaadyblah
Or if you’re feeling in fine enough fettle to join in and help us reach our mileage goal there’s still plenty of May left to see how far you can get. Alternatively you could hold one of our Hypermobili-Tea events later this summer. I’ll be doing that too – I’ll need the cake after all that swimming…
For EDS awareness month in 2013 then, I’ve put together an informal FAQ…
Q: What exactly is EDS then?
A: Ehlers Danlos Syndrome is a group of connective tissue disorders caused by a defect in the way the body produces collagen. Because collagen is found throughout the body, EDS has a wide range of symptoms affecting many body parts and systems.
Q: Have you had it long?
A: Yes. It is genetic. I’ve had it as long as I’ve had connective tissue and experienced symptoms all my life. The disorder was diagnosed in adulthood meaning much preventable damage had already been done. Fortunately, early identification of Hypermobility Syndromes (EDS is just one type) is now becoming more common and so patients can receive treatment and support before irreversible damage has been done.
Q: Does it hurt?
A: Yes, it hurts a great deal. My joints dislocate easily and often, causing…
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