Ehlers-Danlos – My experience so far…by Kelly Lawrence Approaching my 40th year I was only diagnosed with Ehlers-Danlos Syndrome in 2010, after at least 12 years of significant pain & symptoms, following operations I now know I should never have had.
Thankfully, unlike many diagnosed, I had a relatively symptom free childhood, although characteristically clumsy. This included one particular time, around 3yrs of age when, being inquisitive (my parents would say nosey) I got my head stuck in some railings! What?! No one else has experienced this? Ok, ok, so that one was just me! Clumsiness aside, the only other signs during my childhood were pains in my legs (shrugged off by everyone as growing pains), my knees & elbows hyperextending & weak (my PE teacher slapping the back of my legs as she didn’t like the way I stood), glue ear and menstrual problems, which regularly meant absence from school.
I left school in 1992 to start training as a nurse, having to give this up due to a weak spine, another missed clue, especially as the Dr who signed off the end of my nursing career was ‘fascinated’ by my hyperextending joints! Sounding familiar…?
So moving on; in 1999, just 11 months after getting married, I had knee ops which changed my life. I walked in, but never walked again without pain and various aids following all types of complications & then all my joints began to really cause problems. The real battles now began. My employer wrote me off and I couldn’t get any assistance, as I had no specific diagnosis. The specialists, many of them, said they could find nothing wrong and that being only 24 yrs. old I should have recovered from the 2 operations they did on each knee, at the same time!
At this point things really changed, some good, some not so good. A charity DIAL, took on my case and fought & won my appeal for DLA and I also received funding from Access to Work which enabled me to work again, assisting with a wheelchair, hand controls for driving and suitable work equipment. I went to work for a charity, as a Regional Health & Safety Adviser ( I know boo… hiss!), driving all over the country enabling people with physical & learning disabilities to do what they wanted to, as opposed to seeing H&S used as an excuse to stop people living their lives.
After a couple of years I began to deteriorate, my marriage ended and I moved from Shropshire to Kent, taking an office based, less mobile job. I can honestly say, although I couldn’t know it at the time, this turned out to be the best thing that could have happened to me. My manager was brilliant, working closely with Access to Work & my new GP finally referred me to a rheumatologist, who diagnosed me with HMS before he even saw me! This helped me manage my symptoms and I was so relieved to know it wasn’t in my head. Yep, you’ve been there too I’m sure…..
So, life went on, I enjoyed working, met lots of lovely friends, took further qualifications and things were going well. Then I began to deteriorate and, following a referral to Professor Bird in Leeds for a 3 week assessment, Ehlers- Danlos was mentioned. I went home with further tools to manage my condition, and a structured medication regime, which helped, however things continued to deteriorate and it became clear that I could no longer work. This is where the job & moving were the best things that happened to me because I met someone, who started out as my manager and ended up being a very dear friend and advocate. Following a very traumatic experience with an Occupational Health Dr, who said there was nothing wrong with me a diet wouldn’t cure (her words not mine, my manager referred me to Professor Grahame who then confirmed a diagnosis of Ehlers-Danlos Syndrome and also referred me to Professor Matthias, and following a number of tests, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome.
In 2012 I was ill health retired from work & terrified about what the future would hold. However, it was most definitely the right thing. Managing my EDS was challenging because the physio etc. was made impossible by the POTS symptoms. Retirement though has made it possible for me to manage these things better. I won’t pretend it’s perfect, whilst my humour, family, friends & my two little dogs get me through, each day is managed as it comes and I have battled with depression, as well as having other EDS associated conditions. I am now though, after many years, finally living my life and I feel at a point where I hope to be able to help others with my skills & experiences learnt over the years. Oh, and one final thing – having time to manage things meant I was able to lose 6 stone – you won’t be surprised to know it’s made no difference to my symptoms and I’m not yet cured….!
Thank you for reading my experiences. There is a key message I hope to get over. No matter how long it takes – don’t give up! If it wasn’t for the HMSA I would have, but I knew in my heart what was wrong and using the information from the HMSA, through publications and seminars, I requested to see the ‘right’ specialists and my diagnosis was at last confirmed and I could begin to manage it. Thank you HMSA!