The story of Laurenna
Growing up I had many ‘party tricks’. I could bend my body into all sorts of strange shapes, turn my feet backwards, bend my fingers right back, lick my nose, drop down into the splits etc, quite a catalogue of things. When I turned 16 I started suffering with my bowel and also I developed a ‘ lucky’ jaw joint. No-one – even doctors – seemed bothered. What followed was 30 years of illnesses, one after the other, I still had a clicky jaw but then my thumbs would dislocate, then my knees started to easily dislocate. I was also diagnosed with Crohns – an inflammatory bowel disorder, as well as a hiatus hernia. Then I began to faint if standing in one place for too long and they found I have a heart murmur, an extra beat and also POTS, Postural Orthostatic Tachycardia Syndrome. After cutting myself one day and not being able to stop the bleeding I was also found to have Von Willebrands- still no-one seemed bothered and I’m certain that I was being labelled as a hyperchondriac. In my 40’s – as well as all these other things – I started suffering from daily crippling migraine attacks and had many injections into my head to try and stop them but nothing helped and I eventually developed a lasting ‘weakness’ down my left side. A brain scan revealed a lesion on my frontal lobe. I went to the dentist and kept telling him I could feel everything and he said I’d had enough local anaesthetic to render a horse useless so couldn’t possibly. All these illnesses were making me depressed. I went on a long haul flight at age 49 and got off the plane with numbness in my thighs and a strange burning feeling inside it. During a check up with a Neurologist in London for my migraines she knew about my thigh and she also noticed a large bruise on my stomach I didn’t know how I’d acquired. I told her about my trip to the dentist and the anaesthetic not working and she said something which I thought was very strange. She said ‘we’re you bendy as a kid’. I said ‘yes, very’. She then felt my skin on my arm and pinched and pulled it up quite high whilst saying ‘hmmmmm’. I asked what she was thinking and she said she can’t get involved in anything other than my migraines but she’s got a theory – then left it at that! I was intrigued. When I left I googled some of my symptoms and immediately Ehlers Danlos came up. I did more research and was floored when I read that symptoms often include bowel disorders, blood clotting problems, migraine, depression, dislocating joints, jaw joint problems, heart murmurs and POTS, as well as a resistance to local anaesthetic and velvety, very stretchy skin! OMG everything fell into place. An MRI showed my entire spine is crumbling, I have spondylolisthesis, dural ectasia, cauda Equina syndrome and multiple trapped nerves. There are no rheumatologists in my part of U.K. who deal with EDS so I had to go private. The rheumatologist I saw privately also told me I have a question mark shaped spine – scoliosis, flat feet, piezogenic papules, drop foot and other bits and pieces. No-one had ever noticed! She said I definitely have EDS and it’s the first time it’s been on paper. Her report to my GP triggered a mass of appointments. A further mri showed sacroiliitis and the pain doctor put me first on morphine patches and then on actual morphine. No surgeon will ever touch me unless absolutely necessary given my list of symptoms. At 51 I’m too far gone to help but the private doctor says she is worried for my 3 children as at least one will inherit EDS. My life now consists of constant chronic pain and I’m losing my ability to use my legs. My whole way of doing things has had to change and my GP manages my symptoms individually. The pain doctor says in now suffering Central Sensitisation- pain in every joint and muscle in my body. There are only a small handful of doctors in U.K. who specialise in EDS and they are all over 250 miles away in London. I think there should be a lot more awareness of EDS as I’ve come across people who have been told it’s just fibromyalgia and left it at that.