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EDS Awareness Month 2015

In 1993 when I was diagnosed with Ehlers-Danlos Syndrome as a child, hardly anyone had heard of it. Now I find more health professionals know about it, although not necessarily in detail. I always explain how hypermobility Ehlers-Danlos Syndrome is not the same as hypermobility. I have met health professionals who think they are the same, but they are not. Here’s why.

Lots of people have hypermobile joints and might describe themselves as double-jointed, but with Hypermobility EDS (formerly known as EDS Type 3) it can affect the whole body. Fragile and stretchy skin, loose unstable joints that can sublux and disclocate, and brain fog and fatigue are just some of the symptoms. I bruise my skin very easily and can identify every scar on my body – from falling over and gouging a hole in my knee as a child which left a keloid scar, to the scratch from a rose bush on my arm last year, to the raised scar left from the BCG injection I had as a teenager, to the raised purplish-red surgical scars on both feet from operations aged 9. Just some examples – there are more!

Slow healing is also something that affects me. If I damage my skin in any way (it tears very easily) it will take ages to heal. Having a regular blood test usually results in a bruise. Urinary problems are now part of the mix and apparently they’re likely to be EDS-related. A barium meal showed that I have ‘dysmotility of the oesophagus’ – or in plain English, I have trouble swallowing either food or water. Chronic, widespread joint pain has always been an issue, particularly after walking or any kind of physical exertion like swimming. I need to have regular naps as a result.

One of the most crucial aspects of Hypermobility EDS (for me) is that local anaesthetic is not effective. At the dentist, I need three lots of anaesthetic before I can’t feel pain. I even had to stop a foot surgeon slicing into my left foot because I could feel the knife going in. It was the worst pain ever, I was crying out in agony and had to squeeze the hand of a nurse in the operating theatre to stop myself from screaming. Upsettingly, I had told the surgeon in advance that I would need more anaesthetic but he hadn’t listened. Time and time again, this has happened. When I needed a laryngoscopy (where a thin tube called a laryngoscope is used to examine the throat – it has a tiny light and lens on the tip and it works like a telescope) -some local anaesthetic was sprayed up both nostrils. I expressed concern that I had not been given enough local. My consultant replied “My three nephews have EDS, it will be fine.” I trusted him but it was a disaster. I was in excruciating pain when he passed the tube through my nose and down my throat as far as my vocal cords and voice box (larynx). My eyes filled with tears which streamed down my cheeks. I couldn’t articulate the extreme pain I was in but he should have stopped when he saw my reaction. It is astonishing that he continued. I was so traumatised by this particular procedure that I have refused to have many procedures under local anaesthetic since, opting for conservative, non-invasive options instead. I really hope that this EDS Awareness Month the medical community will take the time to learn more about Ehlers-Danlos which will improve treatment and management for people living with it day-to-day.

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