A young woman who spent ten years without a diagnosis after being told she had months to live is taking her fight to the heart of government — with international music star Brian Hyland set to perform at Downing Street in support of her campaign.
Ashleigh Harley is using her own extraordinary experience of delayed diagnosis to launch her Early Diagnosis Campaign, calling for greater recognition of complex conditions including Ehlers-Danlos syndromes (EDS) and POTS.
Ashleigh spent a decade seeking answers before receiving a diagnosis. She is now determined that others should not have to endure the same diagnostic journey.
Her campaign will be brought into the spotlight at Downing Street, where Brian Hyland — best known for the international hit Itsy Bitsy Teenie Weenie Yellow Polka Dot Bikini — will perform in support of Ashleigh and her campaign.
Ashleigh has also released ‘Itsy Bitsy Bikini’, a new track inspired by Hyland’s iconic song, with lyrics highlighting her campaign for earlier diagnosis. The single is released 14 August 2026.
Ashleigh said:
“I was told I had months to live. Today, I’m alive because I never gave up hope. I can’t change what happened to me, but I can fight to stop it happening to someone else. If my music and my story can help save even one life, then every battle has been worth it.”
For Ashleigh, the campaign is deeply personal.
After spending ten years without a diagnosis, she wants to see greater awareness among healthcare professionals and decision-makers so that patients with complex and overlapping symptoms can be recognised, assessed and supported sooner.
The Downing Street event will also mark the launch of Ashleigh’s charity The Dark Horse Foundation, a new charity working alongside members of the House of Commons and a new All-Party Parliamentary Group to improve outcomes for patients facing delayed diagnosis of complex conditions such as Ehlers-Danlos syndromes.
The Foundation aims to develop services that work alongside the NHS to help shorten diagnostic journeys, improve access to treatment and prevent others from experiencing the devastating consequences of delayed diagnosis.
Ashleigh hopes the campaign will turn her own experience into meaningful change for others.
“I survived my own diagnostic journey. I don’t want someone else to have to fight as hard as I did just to be heard, believed and diagnosed.”
Ashleigh’s campaign is urging policymakers and healthcare leaders to recognise the importance of earlier diagnosis and better support for patients with complex conditions.