EDS Fact: Number 66


EDS 766




Hi everyone,
I have some great news! Tomorrow I get the keys to a house with an upstairs and downstairs toilet. This will massively help me as I currently live in a top floor apartment with no lift and struggle to get up and down the stairs, especially on a bad day.
I am also seeing my urologist tomorrow to discuss the next steps in his plan to fit me with a sacral nerve stimulator. Neuromodulation can be used to treat both bladder problems and bowel problems at the same time. A small device, which is similar to a pacemaker, is surgically implanted just beneath the skin in the upper buttock. It delivers low amplitude electrical stimulation via a lead to the sacral nerve, usually accessed via the S3 foramen.
First they surgically fit a temporary wire which will be connected to an external battery and worn on a belt for the evaluation period. If the evaluation period is positive then a permanent battery will be surgically placed.
I have not seen my urologist since I received the results of my MRI scans in London and I am not sure if they will influence what happens next with regards to the sacral nerve implant. I will find out more tomorrow!
Hope you are all as well as can be.
Love & Hugs, Charlie xxxx

“Joint Hypermobility: Emerging disease or illness behaviour?”



“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

EDS Fact: Number 34


EDS 34

EDS Fact: Number 34

Subtotal Colectomy With Ileorectal Anastomosis.


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”.

 This shows what was removed, how my insides looked before and how they look now.

This shows what was removed, how my insides looked before and how they look now.