- M
I'm Emma and I’m an artist who creates sculptures from repurposed vintage books. I am partway through an incredible but challenging journey; initially to save my life and now to enable me to hold my head up and improve the quality of that life, which without the support and generosity of so many amazing people may not have been possible.
I live with a connective tissue disorder called hypermobile Ehlers-Danlos Syndrome (hEDS), which means the collagen in my body is overly stretchy. This affects multiple systems in my body, causing widespread debilitating symptoms including daily joint subluxations and dislocations, fragile skin, chronic pain, and, most recently, increasing instability in my neck.
It has now reached the point where I am unable to hold my head up without a neck brace. My neck "clonks" out, forcing me to push it back into place, I have a lot of pain in my neck and head and I struggle to swallow; at times it can be really frightening. To manage these symptoms I am forced to spend much of my time lying down.
I have had to adapt how I work in order to allow me to continue sculpting. I work lying on my bed, to help manage pain and joint instability, where I create intricate book sculptures of the natural world which together with art I am so passionate about. The instability in my neck is currently making this even more of a challenge.
Unfortunately, the NHS does not currently provide adequate long term support for my condition in terms of specialists, specific scans, or access to surgery when physiotherapy and other treatments have not been enough. As a result, I have faced either dismissal or a lack of referral options—an experience tragically common to many EDS patients and their families.
With no viable options at home, I looked abroad and was incredibly fortunate to find a specialist team in Germany willing to assess my spine and vascular system and then think creatively to come up with a solution. I have recently returned from almost 3 months in Germany having undergone lifesaving surgeries for multiple vascular compression syndromes which were compromising blood flow to many of my major organs including my brain.
Until recently, I have avoided showing my face and sharing my health struggles alongside my work, preferring to let my sculptures speak for themselves. But I now need to share my story to ask for further help (something which is possibly more frightening than anything else I’ve faced) because I need to raise the funds for surgery that will allow me to hold my head up again and regain my life.
Through the incredible kindness and generosity of family, friends and people that I have not even had the privilege to meet I have now been able to cover most of the costs of my initial surgeries for vascular compression syndromes. I am now continuing to raise funds through this GoFundMe page and the sale of a book of my work ‘Return to Nature’ so that I am able to return to Germany where specialist surgeons will be able to perform the final surgery to stabilise the spine in my neck.
Any financial support, no matter how small, would be deeply appreciated. If you’re unable to contribute, sharing my story would mean the world—it will not only help me but also raise awareness of the insufficient understanding and support available in the UK for people living with EDS and all its complexities.
Link to my book:
Instagram:
Thank you for reading and for any help you can offer. I am forever grateful.
Updated: 06/06/26