I Need Urgent Neurological Treatment and Support

I'm a journalist and disabled entrepreneur living with a serious, undiagnosed neurological condition. In 2022, I had a stroke that changed the course of my life. Doctors had no answers. Instead of recovering, my symptoms have worsened over time. For three years I have watched my body deteriorate and worsen over time. At night, violent seizures wake me up, causing injury, and these have never been formally assessed. Because it was misdiagnosed I will have to wait another year to see another neurologist.

I now experience, cognitive lapses, breathing issues, and progressive nerve damage and muscle weakness. Both hands are affected so I can't pick things up, and the longer it is left the worse it is getting, leading to potentially irreversible damage. My speech is impaired, and my ability to work is increasingly limited. I have put money, time and effort into launching my own business, as the unpredictability of the disdease means working for others ischallenging but there is still a lot I want to do with my life. I have lost of time. Every day is spent chasing referrals and trying to communicate with the DWP, disheartening, frustrating and there are times I have not seen a way out.

At first, my condition was dismissed as psychological — a sadly common experience for women with rare or complex illnesses. But now, even my GP and physio have urged me to go private. A re-referral through the NHS could take up to a year, and I’ve already gone three years without treatment. I firmly believe it's treatable, or slow-able. Currently none of my symptoms are being treated without a diagnosis.

I’ve always been independent but I've reached a point where I can’t manage alone anymore.

Why I’m Fundraising

I’m raising money for urgent assessments, adaptations, and ongoing support. These will help me stay safe, maintain some independence, and finally access the medical answers I need.

I’ve exhausted my personal funds after years of trying to stay afloat — now I need help to keep going. I have postponed plans to study and while waiting for a diagnosis, formed a business as I did not want to give up work. However since setting the business up, symptoms got worse and my window of energy became shorter. Working for others with an unpredictable illness and limited physical function. It now affects my speech, and has led to isolation. I don't want to be sidelined by an illness because it hasn't got a name, but there are systemic problems that have prevented me from getting a diagnosis. In live in Haringey, just voted Britain's worst borough, and I'm female, so I'm less likely to be taken seriously by medics. It came out of the blue, at a time when I thought I had never been healthier, and I've battled to be heard.

What the Funds Will Cover

Private neurological assessment and follow-up treatment

Diagnostic scans and tests (e.g., EEG, EMG)

Travel and overnight stays for specialist appointments

Mobility and pain relief equipment

Adaptive tech for communication and work

Repairs or replacements for broken essential equipment

Supplements for metabolic and mitochondrial function

Basic support needs for daily functioning and safety

My Work

Before all this, I was a freelance journalist preparing to apply for medical school. I’d booked my UCAT exam and was scoring well in practice. I was climbing regularly and fit. My body suddenly gave way.

While recovering, I set up a small business and began documenting the surreal experience of becoming newly disabled, but kept retreating into myself and as the illness took hold, social situations became difficult. Having an illness has made me the problem, and it's hard having to beg but I know I'm not the only one struggling.

Three years is too much. My body is under a lot of stress.

I’ve avoided writing about myself as much as possible, but I’m ready to share if it helps others feel less alone.

Thank You

Your support means more than you know. It restores not just my health and safety, but my dignity, autonomy, and ability to keep going.

If you can’t donate, please consider sharing this — it really does help.

Thank you,

Rebecca