A mum with a "torturous" incurable condition has shared footage of her collapsing outside her home to show the "agony" of an invisible illness."

Alex Akitici, 51, lived a "relatively normal" life until she collapsed ten years ago while trying to get to her bedroom."

Her husband, Attila, 43, rushed her to Luton & Dunstable University Hospital, Luton, where she was initially diagnosed with migraines.

But after 11 additional months of constant fainting, hitting a maximum of three a day, Alex decided to go to a private clinic for more examinations - where she was diagnosed with Ehlers-Danlos syndrome (EDS) in December 2015.

Now, Alex wants people to "rethink their perceptions" of disabilities after seeing the footage of her collapsing. "

Alex, a street works manager from Dunstable, Bedfordshire, said: "People don't know I'm living in agony with an invisible illness. "

"If I walk into a disabled toilet instead of using my wheelchair, I get all sorts of looks and comments. "

"I once burst into tears in a shop because it upsets me so much."

The Ring camera footage, taken on February 11, 2025, shows Alex suddenly falling to the floor after getting out of a colleague's car and making her way to a bench.

She'd just got back from a work meeting, and was feeling "okay" just before collapsing. "

Her colleague helped her up and took her inside the rest.

"I was getting out the car to make the three steps to a bench outside my front door to sit down," she said."

"But I suddenly felt disoriented and unwell."

Before her diagnosis of EDS, Alex says she used to suffer from back problems and stomach issues - but otherwise "functioned well."

But on January 19, 2015, after driving home from work, Alex went to lay down - but on the way to her bedroom, staggered, collapsed and lost consciousness.

Attila drove her to Luton and Dunstable, where the neurologist said her symptoms sounded like migraines.

"I just kept collapsing though," Alex said. "

"And it's been 10 years since, and it hasn't stopped."

The mum-of-two, with daughters aged 16 and 18, said she was able to get private healthcare through her work - so she asked them to give her a second opinion.

In December 2015, she was officially diagnosed with EDS - and told she had dysautonomia, a problem within her nervous system which disrupts the body's autonomic body processes.

This means she always feels dizzy and disorientated, and can't stand for long periods of time without collapsing - her triggers include hot temperatures, hormone fluctuations and standing up for long periods of time.

Alex has been told there's no cure for EDS, and she's only able to manage it with blood pressure medication and steroids.

"It's like daily torture," she said. "

"When I stand up, my heart is just going too fast, all the time."

"It's not great - but what can I do?"

In the 10 years since her diagnosis, Alex has developed osteoarthritis in her right knee and hip, because she repeatedly impacts them when she collapses.

She says she's nearly a full-time wheelchair user, but still gets "funny looks" from strangers when they see her standing up, or walking. "

The mum-of-two's aim is to "improve society's perception of disability" - and gain some recognition for people with "invisible illnesses," like EDS. "

She added: "I have a blue badge, and I've had security guards come up to us and tell us we can't park in disabled spaces. "

"Once, I had a shop assistant tell me I needed to ‘prove my disability' if I wanted to bring my assistance dog inside."

On November 21, 2023, Alex addressed 25 MPs in parliament and spoke about her experience with EDS.

She says her main goal is for the healthcare system to "catch up" with private clinics when it comes to providing information on the condition. "

"My diagnosis in hospital was migraines," she said. "

"And my private diagnosis was EDS - which is when everything I'd been going through started to make sense."