EDS Facts: #14


EDS Facts_ #1(6)


EDS Fact: Number 9


EDS Facts_ #1 (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

Go Fund Me.


Thank you so much to my amazing Mum. She is the most selfless person I have ever met. I love you so much xx


I’m not ashamed to try and raise some money for my daughter to get the care she deserves to improve her quality of life. I’m not expecting anything from anyone, so please don’t feel obliged or put under any pressure, but if you could at the very least read her story and spread awareness, it would be very much appreciated.
She always thinks of others, does everything she can to help herself and to raise awareness.
She is an inspiration and I’m very proud to call her my daughter xxx
The plan is to help Charlie. Help others through spreading awareness and then help others financially if we are honoured enough to get in that position.
Thank you for reading xxx



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

EDS Fact: Number 34


EDS 34

EDS Fact: Number 34