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Charlotte Twinley | Navigating a stoma and Ehlers Danlos Syndrome

"You don’t have to look a certain way to be worthy"

#IDANCEBECAUSE welcomes #ISTANDTALLBECAUSE. Inclusive in nature, it aims to tell stories - not just dancers' stories - with authenticity.


@charlotteamylouise's honesty, confidence and altruism completely floored me. She is a force of nature, and it was a privilege to work with her.

📢 Charlotte Twinley @charlotteamylouise // Mental health and chronic illness advocate 📢


#ISTANDTALLBECAUSE you don’t have to look a certain way to be beautiful or worthy.


I have Ehlers Danlos Syndrome and an ileostomy (a stoma), which was formed in June 2018.


Ten years ago, my life was turned upside down. I started experiencing stomach pain and was eventually diagnosed with Ehlers Danlos Syndrome (EDS), a connective tissue disorder that can affect any part of the body; for me, it was primarily my digestive system and joints. I was put through a whole load of tests, hospital appointments and medications which left me embarrassed about my condition.

I lost weight and it badly affected my mental health. I developed an eating disorder, along with severe depression and anxiety. It took me about a year to become physically ‘healthy’ again. However, it wasn’t until my digestive issues got so bad that I needed a stoma bag that I mentally recovered and could move forward. I still get some bad days where my anxiety kicks in but now I am so much more confident and happy.


I believe that everyone is unique and amazing in their own way. Our differences is what makes us beautiful and, more importantly, human. It doesn’t matter what you look like or what your ethnicity, gender, age, size/body shape, sexuality is.


There is always hope; it may not seem like it now but I promise you there is. Despite all the cries at doctor’s appointments and panic attacks and everything else, I have managed to pull through and I know you will too.


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