The Invisible Disease

 In Adults, Ehlers-Danlos Syndrome, Hypermobility Information

The Invisible Disease was created by Danielle McCarthy and published on Untold Sydney on 5th June 2016. Since then, it’s been seen by thousands of people. Thank you to resident blogger, Sam Payne, Dr. Vincent Ho and Danielle McCarthy for this great awareness raising video!

“Ehlers-Danlos Syndrome is a connective tissue disorder that has been labeled the ‘invisible disease’.  The syndrome has non-specific symptoms that has led to many Australians who suffer from EDS to go undiagnosed. The hypermobile type of EDS is quite common and it is thought that it could affect up to 1% of the Australian population. Danielle McCarthy reports”.

For many people with Ehlers-Danlos Syndrome it is an invisible disease. More often than not EDS is misdiagnosed, dismissed or ignored. Not so much because you don’t see their braces, splints or assistive devices, but more so because it is as though it is not seen be doctors as a Syndrome – it’s seen as individual symptoms, not the cluster of symptoms that make up the syndrome.

Part of the aim of Hypermobility Connect is to raise awareness of Ehlers-Danlos Syndrome and the other causes of hypermobility like Loeys-Dietz Syndrome and Marfan Syndrome so that more people are correctly diagnosed, and more quickly than ever before. It’s astonishing how few medical and healthcare professionals know about Ehlers-Danlos Syndrome (and even fewer Loeys-Dietz) and its signs and symptoms, but with people like Sam taking a stand, the message is going to get out there faster than ever.

— Michelle —

  You can read more about the invisible disease on the About Hypermobility page.   And here you can read Sam’s latest blog post about living with ‘the invisible disease’: The Emotional Challenge SaveSave
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