“Joint hypermobility syndrome is a common clinical entity which is much misunderstood, overlooked, misdiagnosed and mistreated. It was first described in the 1960s as a purely musculoskeletal condition due to joint laxity and hypermobility occurring in otherwise healthy individuals. Some four decades later it is now perceived to be a multi-systemic heritable disorder of connective tissue with manifestations occurring far beyond the confines of the locomotor system and with ramifications potentially affecting most, if not all, of the bodily systems in one way or another.
Most authorities in the field find it clinically indistinguishable from the Ehlers-Danlos syndrome – hypermobility type (formerly, EDS type III). In >50% of patients the diagnosis is delayed for ≥10 years. Failure to diagnose and treat the condition correctly results in needless pain and suffering and in many patients to a progressive decline in their quality of life and in some to a loss of independence.”
So I’ve just read Professor Grahame’s above journal and I actually have tears coming down my face. It is so strange to read something and just think “Wow, this describes exactly how I am, how I feel and what has happened to my body”. This has explained so much to me and if you haven’t read it I highly recommend that you do, in fact it would mean a lot to me if you could read and share this to help me in my journey to raise awareness. Professor Grahame is such a fantastic man and his work for those with EDS is just brilliant.
“To dismiss disparate symptoms as ‘illness behaviour’ is, in my view, wrong and does much disservice both to our patients and to our reputation as a profession.”
That just shows how much he genuinely wants to help those with EDS. Professor Grahame you are a wonderful gentleman and thank you so much for your research into EDS and fighting with us!
Hope you’re all having a pain free day.
Love & hugs, Charlie x
On Friday I had an appointment at the hospital with a consultant rheumatologist. Before my appointment came through I didn’t know what a rheumatologist was so in a few words the role of a rheumatologist is to diagnose, treat and medically manage patients with arthritis and other rheumatic diseases. These health conditions can affect the joints, bones, muscles and sometimes internal organs.
The consultant I saw was a very nice woman who was honest and told me upfront that she wasn’t an expert in Ehlers-Danlos syndrome but was willing to help me the best I could. She examined my joints, skin etc and decided it would be best that I see a consultant who does specialise in Ehlers-Danlos syndrome. This will mean going to London again but I am confident that I am now on the right path to get help. She also recommended that I try Yoga, Pilates and similar exercises to help strengthen my joints and swimming.
I also received an appointment through for 11th March and in big bold letters I just saw the words GENERAL SURGERY and freaked out a bit. It is with a colo-rectal surgeon but at a different hospital from my previous surgery. Strangely, there was a plastic bag containing a rubber glove and a suppository with instructions to use it before attending my appointment. I must say I think this is the strangest thing I have ever received in the post and this hospital must do things different to the other hospital I attend. I am now feeling nervous but hopeful that I may get some help.
Hope you are all having a pain-free day.