I'm Emma, and I create sculptures from repurposed vintage books.

I also 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 partially dislocates, forcing me to push it back into place. I struggle with swallowing, suffer from pain and splitting headaches and experience vision problems. To manage these symptoms I am forced to spend most of my time lying down.

Unfortunately, the NHS does not currently provide adequate longterm support for this 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. Even a private referral for the necessary scans within the UK was rejected because of my inability to hold my head in certain positions.

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. With my mum’s help, I have managed to travel here safely but since arriving in Germany my condition has deteriorated and I am now unable to travel home without multiple surgeries to stabilise and treat my condition.

I have received the necessary scans which have revealed multiple vascular compression syndromes including compression of my jugular vein, duodenum and kidneys among others which explain my chronic symptoms, weakness and neck instability. I am desperately in need of life saving surgery by a pioneer in this field in Germany.

Until now, I have avoided showing my face with my work, preferring to let my sculptures speak for themselves. But I now need to share my story to ask for help—something that feels 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 to regain my life.

I have set up a GoFundMe page and, alongside this, published a book of my work. Whilst confined to my bed over the last few months, I also created 9 tree sculptures of varying sizes, titled 'A Forest of Hope', which will be available soon.

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 its complications.

Link to my book:

https://www.emmataylorbooks.com/book

Instagram:

https://www.instagram.com/emmataylorbooks/

Thank you for reading and for any help you can offer. I am so grateful.