EDS Campainer Sings Itsy Bitsy Teenie Weenie Yellow Polka Dot Bikini Outside No 10

A campaigner has described performing a 1960s pop hit outside Downing Street, as part of efforts to get more attention on her issue, as “magical”.

Ashleigh Harley, 27, was joined by singer Brian Hyland, who recorded Itsy Bitsy Teenie Weenie Yellow Polkadot Bikini in 1960, for the performance on Saturday, which she claimed attracted a crowd of hundreds.

The event was part of a campaign by Harley calling for better diagnosis and treatment for people with health conditions.

Harley has Ehlers-Danlos syndrome, which affects connective tissue like tendons and ligaments and causes her joints to dislocate.

Harley was diagnosed privately in 2020 after more than a decade of symptoms and exploring what she described as every available NHS option. She said she previously needed life support after becoming unable to eat, walk or speak.

The campaigner, from Luston, Herefordshire, released her own version of Hyland’s hit to raise money for her charity, Save Our Lives.

She had challenged Andy Burnham to a “rock battle”, but there was no sign of the prime minister at Saturday’s performance.

Instead, in true rock ‘n’ roll style, Harley was “descended on by the police”.

“They actually became very supportive,” she said, describing the gathering as a “magical day”.

“We had children with the illness there. Hundreds turned up. It was huge. Everyone was singing it in the street. We were all dancing together.”

Hyland, 82, said he had been keen to take part after he received an email from Harley and was struck by her experience of living for years without a diagnosis.

“I had never heard of that problem before, of people being misdiagnosed and languishing for sometimes years,” he said.

“I thought anything I could do to shorten that time of getting something and finding out what it is, I thought that would be a positive thing.”

Harley said her charity wanted to develop a diagnostic tool to help identify young people with complex conditions sooner.

“We’re going to do it all through music,” she added, with her single raising funds for the cause.

The Department of Health was approached for a response to Harley’s campaign.