Story:

Hi, my name is Els, I live with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that has meant 20+ years of surgeries, from spinal fusions to arthroscopic hip operations, and constant pain.

Right now, I’m at breaking point. My cervical spine has become so unstable that due to muscle compensation I can barely hold my left arm up and due to balance problems I can hardly leave the house. The pain is constant and exhausting. I have severe dizziness, crushing headaches, and episodes of vision disturbance. My jaw is so affected that some days I can’t talk or even eat. I can’t sit, stand, or walk for more than a few minutes, and even using a screen or my phone leaves me wiped out.

All of this together has left me isolated and struggling to even communicate, because the effects on my brainstem and cranial nerves cause anxiety, memory problems, thinking difficulties, emotional overwhelm and confusion. I’ve been waiting months for "urgent scans" and intervention on the NHS through my regular hospital (the RNOH), but in the meantime I’m collapsing.

My former GP put me on antidepressants that worsened the situation and though I’ve finally switched to a supportive GP that have referred me separately for further imaging, the only real hope now is urgent intervention with the specialist team at UCLH.

Without that, I’m afraid I won’t survive this.

(I'm aware that sounds melodramatic but breathing is difficult some days and the soft tissue involvement has had me admitted through A&E because my throat was swelling up.)

With it, I could finally reclaim some quality of life — not just existing in constant pain, but actually living again.

What the funds will go towards:

Urgent consultations and interventions with specialists at UCLH

Basic living costs while I’m unable to work due to my health

My bigger purpose

When I am on the path to recovery, I have a clear goal: to build a business that supports other people with complex health issues. I want to shine a light on what it’s like to live with uncertainty when you don’t always know what’s wrong, and to create tools and resources that make others feel seen, understood, and supported.

I've only been able to join the dots on the frightening and complex experiences of last few years, and access the appropriate if glacial routes to care, because of my experience and education in medical fields and anthropology.

Most people wouldn’t be so “lucky” and that’s why I feel so strongly about sharing my journey, so others don’t get left in the dark the way I nearly was.

I don’t like asking for help, but I’ve reached the point where I can’t do this alone.

If you can contribute, share, or simply send kindness my way, it means more than I can say.

Thank you for helping me hold on — and hopefully, rebuild my life and create something meaningful for others, too.