EDS Fact: #6


EDS Facts_ #1


Not all disabilities are visible…


So lets be honest, although most of us probably don’t want to admit it, being judgemental seems to be human nature. I have judged people and I have been judged but we don’t know everyone’s story and it’s a sad trait to have. I guess a lot of it is to do with stereotyping. There are so many stereotypes out there and these seem to get passed from generation to generation and it really needs to stop.
I went to a hospital appointment recently with my carer and was waiting to park in the disabled bay. I’m a 25 year old woman with invisible disabilities and I was judged by two different people whilst waiting. A gentleman who was coming out of the bay wound his window down and made a hand gesture to call me a “w*nker” and an elderly woman who must have wanted the space called me a “silly cow” and waved her blue badge at me so I waved mine back at her! A similar thing happened to my friend recently. She is 18 and she was waiting for a disabled bay and an elderly woman wound her window down and told her that those bays were reserved for disabled people so she showed her badge and the lady then said that they were for “elderly people” and that she should go and park elsewhere.
Think about it. Have you been judged? Have you judged someone? We don’t know everyone’s individual story.
The really thin girl you assumed was anorexic may be desperately trying to put on weight or could be fighting an invisible illness that makes gaining weight difficult for her.
The guy you saw on crutches struggling to walk last week who is walking today may be suffering with a condition that varies massively, it doesn’t mean he was faking it.
Please try not to stare at the young girl in the wheelchair trying to figure out what is wrong with her.
The guy who has used the disabled toilet but looks “normal” could be suffering with IBD.
Not all disabilities are visible. Not all disabilities are the same. Think before you judge.

Love & hugs,
Charlie xoxo

EDS Fact: Number 82





Awareness Needed…


Last night I was taken to hospital by ambulance after passing out and being unresponsive due to severe pain levels. Unfortunately once again I was faced with people who had never heard of Ehlers-Danlos Syndrome and didn’t know how to treat me. I was pricked with needles numerous times, even after saying I have a connective tissue disorder and have fragile veins and usually need a more permanent line for IV’s, I was left for hours without pain relief as they didn’t know what to give me after I had a cardiac arrest in November and unfortunately there was not a lot that could be done. I do not blame the medics as they were very busy and the staff were all very kind and wanting to help, but this shows how we need to raise more awareness of Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and all the other “rare” and invisible conditions out there. We need more specialists locally, not just in London. We need a clear care plan for when things like this do happen. We need help. We need AWARENESS!


I may not look sick on the outside but on the inside there is a different story so I decided to take a picture where I look “well” and write some of the conditions and symptoms I have that are invisible.


Together we can make a difference ♥

Upright MRI in London.


Yesterday my Mum and I went to London and I had an upright MRI of my Cervical Spine + Cranio-cervical junction. After the MRI the Professor came to talk to me and said he had been looking at the images as they were coming through. He asked me if I had been in any falls and knocked my head when I was younger and I thought about it and couldn’t remember anything significant and neither could my Mum. I was always a clumsy child who would fall over the slightest thing and was covered in bruises but I couldn’t think of a particular one where I had hit my head. He then went on to ask if I had been in any accidents and I told him about a car accident I was in when I was 18 and that thinking about it, it was when my symptoms seemed to get worse. He then began to tell me what he had seen in the MRI but I’m not very good at explaining things so I will share a bit of what the report says. When making assessment of my upper cervical spine in cranio-cervical junction, especially the relationship of the atlas (C1) and axis (C2), there is a significant abnormality. There is an element of malalignment of the atlas over axis when looking straight ahead. When I look to the left, dislocation at of the left facet joint of the atlanto-axial joint becomes evident.
The atlas (C1) and axis (C2) are the two topmost vertebrae. The atlas along with the axis; forms the joint connecting the skull and spine.

I have only done a little bit of research and I’m still trying to get my head around this (no pun intended). These images really helped me understand it a bit better so I thought I would share them.
UC-Care-health-vs.-sickness Head-and-neck-Misalignment brain


If the atlas vertebrae is out of alignment it can cause lots of problems and have a “domino” effect on the entire musculoskeletal system, the circulatory and the nervous systems, by creating imbalances and dysfunctions in various parts of the body.
I will try to write a post about the effects of atlas misalignment in more detail when I am feeling a bit better, but I just wanted to give an update on my MRI results. I am really quite confused and not sure what to do next after these results. The Professor told me that he isn’t aware of any surgeons in the UK who are comfortable to complete surgery to fix this on someone with EDS. He gave me the details of a chiropractor but I am nervous about seeing one and it will cost a lot of money, as you can’t get a chiropractor on the NHS.
Thank you for reading this and I will try to keep you all updated. If anyone has any advice or experience with the problems I have listed above I would really appreciate it if you could message me.
Love & Hugs,
Charlie x