I’m Claire and I have Ehlers-Danlos Syndrome, Type III (Hypermobility). I wanted to write a blog about Ehlers-Danlos because it is a fairly recent medical discovery, and finding out about it has helped me to make sense of many things which have happened in my life which until now had all been viewed as discrete and unrelated illnesses. When I talked to my GP about EDS, I was amazed to find she knew next to nothing about it. She has been great and has been learning with me. But EDS still remains largely an unknown disease. It is also invisible to many sufferers who have never been diagnosed; and invisible to the general population who know nothing and can see nothing wrong in the EDS people they meet. People with EDS look normal! Apart, that is, from the strange joints they show as party tricks. But some people are in such pain that they are wheelchair-bound or need sticks to walk. The pain is often difficult to describe to others and, without clear diagnosis, to ourselves.
I was born in Nigeria with a congenital cataract which left me blind in my left eye. I can do most things in life with one eye except see 3-D films, so it is not exactly a huge hardship. I was also born with congenital hip dysplasia. My left hip was malformed and I always walked with a peculiar gait. Since the hip was not dislocated at birth the dysplasia was not discovered until the chronic pain had become unbearable. A hip replacement in 2010 helped enormously, although (as with many EDS people) problems of scar tissue and poor healing mean it is not pain-free.
Various operations as a child, persistent ankle traumas and regular visits over many years to the osteopath for neck problems and everything from bursitis to frozen shoulders were all seen as discrete problems. I never knew there might be something which connected all these things. My doctors didn’t either. After all, each of the symptoms was understandable in its own right and none was particularly unusual in itself. Lots of people have frozen shoulders, aching joints and sprained ankles. What amazes me is the discovery that EDS joins all these together and accounts for the so many of the symptoms I have experienced.
My two daughters were born (after two miscarriages). Of course they are the best, most gorgeous and beautiful girls who have ever existed! When my daughter, R, was at the John Radcliffe Hospital after a tendon operation in 2008, the physio told her that she had hypermobile hands, and that we should research this as it might not mean all fun and bendiness. This was the first we had heard of EDS. Of course I googled. There was little published literature, but I read all I could. It became obvious that this was a genetic condition which I had passed to both my daughters. It wasn’t until very recently that more pieces of the jigsaw started fitting together and I have found that it is probably through my father’s side of the family that this has come. My sister is also hypermobile and symptomatic. Cousins are emerging who are ‘double-jointed’ (often the first indication, even though the term itself is not a medical or helpful one) and we have a family history of aneurysms. The wider family story is still in its investigative infancy, but is fascinating as it unfolds.
Professor Rodney Grahame, who has been the country’s prime mover in research into connective tissue disorders (and who diagnosed us), has written, “… many (perhaps most) hypermobile subjects have few or no problems and enjoy a symptom free life. Others seem to have problems at certain times of their life and not at others. It is not always possible to pinpoint the determining factors, although a change in lifestyle, particularly involving unaccustomed physical exercise, is the usual precipitating factor.” Rodney Grahame, “Joint hypermobility and genetic collagen disorders: are they related?” Article, Archives of Disease in Childhood (Arch Dis Child 1999;80:188-191 doi:10.1136/adc.80.2.188).
In my own case, hypermobility was not a problem (despite the congenital issues), neither did it stop me functioning normally and working, until a ‘change in lifestyle’ or trauma was the precipitating factor in having painful symptoms. This change came when I suffered abuse, bullying and sexist harassment at work in the Christian college where I lectured in New Testament and Greek, (what a shame that it is not so difficult to imagine abuse in the church these days with the discovery of all sorts of recent unsavouries). At the time many of my colleagues didn’t believe Christians were capable of abuse, therefore it couldn’t have happened. But it did, and I had very little support from those Christians. I was made to feel that I was the problem. Unsurprisingly I no longer count myself as an evangelical, despite 25 years in ‘full-time Christian work’ with some of the most conservative evangelical organisations. I developed post-traumatic stress disorder from the abuse, and dysautonomic symptoms began. I was unable to work for ten years (the first five I couldn’t even read one page of a book – hard for an academic), I slept two-thirds of each day, and my husband could not work outside the home as I was incapable of looking after the children on my own. Some of the very triggers for my PTSD were reading the Bible and going to church and I would sometimes shake with terror. Looking back, it is hardly surprising that EDS symptoms had been triggered. I think probably all three of us became symptomatic at that time.
Since 1999 chronic fatigue and daily pain have been the main symptoms for me, as they are for the majority of EDS sufferers. I have done some part-time work in the last few years as a teacher in a fantastic school, but I cannot work full time as I need days to recover and sleep. Some people describe EDS as a condition where the body uses twice as much energy to keep going as ‘normal’ people. It has to work twice as hard just to keep going. Of course that cannot be quantified, but it certainly feels that way. Unfortunately EDS is incurable. But knowledge helps – above all because I have known the frustration of doctors, psychiatrists and well-meaning people doing the usual thing of diagnosing symptoms as psychological when actually they were simply ignorant that the cause was physical and medical. That has been particularly gruelling. I belong to the Ehlers-Danlos Association and HMSA (the Hypermobility Syndrome Association), I have found like-minded and like-bodied people, I’ve consulted medical experts who know about EDS and learned about techniques such as Pilates to give core physical stability. All these have helped to make sense and give hope. And I would not be here but for patient and understanding family and friends. What stuff they have to put up with! It is a long and painful journey and hasn’t finished yet………..