LIVING WITH EDS (EHLERS-DANLOS SYNDROME)


        What is EDS to me?  Well, EDS comes in different types, I have what is called 'Classical EDS', which means, my skin is stretchy, and I have hypermobile joints ... the things I can do with my fingers and toes, could stop many a dinner party, I can tell you.  According to the latest scientific research, it is passed on genetically, in my case, possibly through my fathers lineage. Through discussions with many family members, my father had shown no symptoms of the disorder, but it is believed that he was the carrier, as my late grandfather had trouble with dislocating joints and a cousin of mine on Father's side also exhibits aspects of the condition. Naturally this in no way lessens my love for my late Father, but now with modern medical and scientific progress we can begin to understand more about this condition.

        When I was born back in 1964 in Coventry, (West Midlands), nothing was known about EDS, so being the first offspring my parents thought 'what a quiet baby'. I slept through the night and when they put me down anywhere I never moved, (in fact my rheumatologist later nick-named me 'a china doll').  In 1965 they had my brother, Paul, he was a noisy baby, moved alot, always inquisitive ... like normal babies.  My parents thought, that there must be something wrong with Paul, (how wrong could they be), however it was by realizing how normal my brother was that made them think there was something wrong with me, plus that they had friends who had babies who were moving around .... it was a good thing as Paul was moving, and playing with things, so it helped make me inquisitive.

        When it got to infant school, my head teacher informed my parents, that I should be seen by a specialist, guess what his name was Dr Kendall (just like my maiden name, it would be amazing if we were related wouldn't it) ... the GP was Dr Galbraith .... Dr Kendall said that there was nothing wrong ... Dr Galbraith wrote to say that he must have had one of his minions to see me, and not him .. so we were called back .. Dr Kendall then suggested that I attend the local hospital (Coventry and Warwickshire) for asthmatics, light exercise.  It was there that we met Mr Howell, the physio;  who said that I was 'treatable' and to his eyes had a lack of co-ordination.  So three times a week until my mid teens, I attended his classes to learn co-ordination, which in turn would help somewhat with the hypermobility.

        Fast forward .... to 1993 .... I'd been diagnosed with Fibromyalgia (see separate page), but knew that there was a piece of the jigsaw missing, the doctor in Coventry said that as far as he was concerned I had Marfams Syndrome ( a cousin in relation to the symptoms of EDS) .... I rang the local group, who asked me whether my parents were both alive, my father had passed away in 1988 from a heart attack ... the group leader, asked me how old I was, I informed her, and she told me that 'I should be dead by now' - not exactly the words you want to hear at all!  That's when I had the most massive panic attack, and stayed in bed for three months .... later it would turn out that what I was having was a minor nervous breakdown.

        At the end of 1993, I moved up here to Horncastle (Lincolnshire), to be with my fiancé, Paul, .... we had become engaged in May of that year. Paul managed to get me in with his doctor - Dr. Chris Duckham and he was immediately interested in what was going on with me. In 1994 Dr Duckham referred me to a geneticist at Lincoln, who had visiting him a specialist, (who was Polish), from the USA.  She had read the notes about me, and had cancelled a flight back to USA to see me.  She stretched my skin, and measured me ... my arm span is that of someone over 6ft 2ins, I am in fact 5ft 8ins .... She bent my joints and they muttered alot.  It was when I was back in the room with Paul that they informed us that I had Ehlers Danlos Syndrome, suddenly the jigsaw was falling into place. Now I knew why I was like I was.

        I contacted the EDS UK Support Group which at the time was based in Rotherham, and run by Valerie Burrows and her husband Tom ... they are such a lovely couple.  Meetings are held bi-annually (once every two years), for those with EDS to meet others and listen to talks on the subject.  There are two websites :
UK EDS site:http://www.ehlers-danlos.org/
and EDS Today:http://www.uggen.net/edstoday/
and an email group, which is very useful.

        I was contacted by the Chapel Allerton Hospital in Leeds, who asked me whether I would attend to be checked over for osteoporosis.  I went on a special table.  I was informed later by letter that I had osteoporosis in my spine and hips, and they prescribed a drug + drink which would help.  I duly took this as prescribed but unfortunately the calcium did not go into my bones, it went into my muscles and tissues, causing uncontrollable trembling and hyperventilation. It got so bad that in November 1998 I was admitted to the hospital in Lincoln.  I cannot remember much about this time due to the problems from September 98 to mid 1999, though I was released from hospital after two weeks.  The doctor who was 'looking after me' knew nothing about FMS and EDS, and didn't even believe they existed, saying that I was 'attention seeking'.  My mother and stepfather were called up from Coventry, my brother was informed in Leeds, and my mother and father in-law came as well, my sister-in-law was in the same hospital at the same time in a different ward (for something completely different I may add!) ... Paul informs me that I even went for a walk to her ward to visit her, and she later came down to my ward to play dominoes with me ...  This was the hardest part of my life ...  With the strength of my husband and my family and my in-laws, I have come out of it a much stronger person.

        Paul has been a complete rock to me, throughout my problems, and to him I will always be eternally grateful.
So the diagnosis of EDS is another piece of the jigsaw puzzle of my life.
 
 
 
 
 

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