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 those are just for fun, aren’t they? No – 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 after I had children and the chronic pain had become unbearable. A hip replacement in 2010 helped enormously, although (as with many EDS people) problems of scar tissue 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, until a ‘change in lifestyle’ or trauma was the precipitating factor in having painful symptoms. This change came when I suffered abuse at work in the Christian college where I lectured in New Testament (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). I developed post-traumatic stress disorder, sleeping two-thirds of each day, unable to read books for five years and unable to work for ten years, with my husband not working outside the home and having to look after the children. Looking back, it is hardly surprising that this was the trigger for hypermobile symptoms to emerge.
Since 1999 chronic fatigue and daily pain have been the major symptoms for me, as they are for the majority of EDS sufferers. It has been possible to work part-time 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. Of course that cannot be quantified, but it certainly feels that way. Unfortunately EDS is incurable. But knowledge is always power. And there is help. Belonging to the HMSA (the Hypermobility Syndrome Association) and Ehlers-Danlos Association as well as finding like-minded and like-bodied people, having referral to medical experts who know about EDS and learning about techniques such as Pilates to give core physical stability – all help to make sense and give hope. But it is a long and painful way to travel………..