“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
Sorry I haven’t posted much over the past few days. Unfortunately my illness had gotten the better of me and after thinking I’ve been managing okay in the New Year, my body started saying otherwise. I am getting a bit better though and building my strength back up.
Today I visited the hospital for a gastric emptying study. I had two markers placed at the bottom of my ribcage. I had to drink 500ml of liquid which was a combination of radioactive stuff, water and vanilla fortisips. I had to drink a cup every 2 minutes for 10 minutes and then stand in front of a scanner for 30 seconds facing forwards and then 30 seconds facing backwards. The first scan was right after I finished the last drink and then every few minutes to start with. After the initial scans I had to go and sit in the reception area and go back to be scanned every 10 minutes. This went on for a few hours and then I was told I could leave. I have no idea how it went or when I will get the results so I just left a bit confused.
When I got home I had received a letter from the consultant Rheumatologist that I saw at the hospital last week. I have been referred to the Ehlers-Danlos Service at the Northwest London Hospitals so it looks like more trips to London this year. I am hoping that the London hospitals will be able to help me further on my journey with EDS. The consultant has also arranged for me to have a echocardiogram on my heart and I should receive an appointment for this in due course. I had no idea what this meant but after doing some research it is an ultrasound scan of my heart. I hope that I get appointments soon so that I can get help soon.
Hope you are all having pain free days. Charlie x
I have mentioned a few times that in May I underwent surgery to remove my large intestine, also known as the colon. The medical term is a subtotal colectomy with ileorectal anastomosis but I had no idea what this meant so thought I would do a small post about it.
My colon wasn’t working properly so in a bid to make my gastrointestinal tract better I was referred for surgery to get it removed. The colon was removed from the end of the small intestine (ileum) up to the rectum and then joined back together. I guess the surgeons see it as plumbing, you have a piece of pipe which is getting blocked and isn’t doing it’s job so you take the bad part out and join the good parts together. Unfortunately this hasn’t cured me of my gastrointestinal problems but hopefully it has given you a better understanding of how my insides look compared to “normal”.
Today I visited the hospital for some tests that had been ordered by my gastroenterologist. He has referred me for a few tests so I wasn’t sure what to expect. He explained to me that one of the tests I was going to have was to see if my small intestine is sticking together when it gets overfull. He told me that I would have an NG tube fitted and I would purposely be overfilled with gastrograffin. The letter said I was going to have a Barium meal and follow through so I was a bit confused but I turned up at hospital this morning ready for my tests.
My name was called and I was given a lovely hospital gown to wear, you know the one which fastens at the back but has a slit down the middle so people could see your bottom at times. Luckily they gave me a lovely hospital dressing gown to wear over the top. It was a beautiful stripy one and I resembled Andy Pandy. I was led to an area and told that I would have to drink some yummy Barium and then have a number of X-rays to see if there were any strictures in my small intestine. When some of the Barium passed to my rectum I would be allowed to leave and was told it would probably take around 45 minutes.
I slowly sipped at the aniseedy, chalky drink trying my best not to throw it back up. If you’ve not had Barium before imagine someone liquidising some chalk and giving it you to drink. I drank my 2 cups and felt relief as I finished the last bit, that was until the lady told me there was still a bit left for me to drink in the bottle and it turned out it filled half of another cup. After I drank the Barium I had to give it 15-20 minutes and then have an X-ray. I took my book with me so the time went fast. I was called for the first set of X-rays and was told everything was looking good and then sent back to wait another 20 minutes. The second time I was in the X-ray room a little longer. Due to my operation my insides aren’t like a “normal” persons. I had a subtotal colectomy with ileorectal anastomosis. This is the removal of the large intestine from the lowest part of the small intestine (ileum) to the rectum. I will post a handy diagram after this post which shows what a “normal” persons insides look like compared to mine. They were struggling to see where the join between the small intestine and rectum was as apparently it wasn’t like what they had seen before. The gentleman thought that some of the Barium has passed to my rectum but couldn’t be sure. He then came at me with a big glove with a plastic spoon on the end? I thought what on Earth is he going to do with that! He prodded my tummy and took X-rays as he did this. I think this was to try and get a better understanding of where abouts in my body the Barium was. He then asked me to roll over on to my stomach which was painful but I did it. Again he took lots more images and still wasn’t sure so they sent me out again to wait another 20 minutes. This happened a few times and in the end he said he thinks that some of the Barium had gone through but was going to study the images further and write a report. He said that my small intestine was very dilated which makes sense since my diagnosis of Ehlers-Danlos Syndrome.
All in all, it wasn’t the test that I was expecting but hopefully it will get me a bit further on my journey. If you have any questions or want to talk about similar experiences feel free to give me a message.
Merry Christmas Eve Eve!