“She fainted in front of me”: Dunstable woman’s experience with ‘invisible illness’ shared in Parliament by MP

Nine years ago, Alex Akitici was diagnosed with Ehlers-Danlos Syndrome (EDS) after starting to collapse suddenly. EDS covers 13 types of the genetic condition, including hypermobile EDS which the 50-year-old has.

In November, Alex and the charity, Ehlers-Danlos Support UK, visited Downing Street with a petition for better EDS education for doctors and for symptom management to be offered on the NHS. While standing outside No. 10, Alex fainted, showing how unpredictable the condition is.

This week, South West Bedfordshire MP, Andrew Selous spoke to the House of Commons about the need for more help for the thousands of people living with EDS in the country.

He said: “We understand that anywhere between 135,000 and up to 300,000 people in the United Kingdom have Ehlers-Danlos Syndrome. Those are only the diagnosed ones, and we think that that is the tip of the iceberg. If we take that higher number, in rough terms, that is about 460 per constituency for all of us—that is only those with a known diagnosis.”

Alex used her private healthcare to get a diagnosis and has to travel to Nottingham and Kent for testing and appointments since these are not covered by the NHS.

She said: “I want to be able to go locally and be treated. If I'm having a flare up, I’d like to be treated by my GP or even my hospital and for all the doctors there to have a full understanding of the multi-systemic condition that it is.”

Since getting her diagnosis, Alex has spent her life savings to make her house accessible – building a bedroom and bathroom downstairs, as now, she cannot use the stairs due to her risk of fainting and injuring herself.

At a meeting with Mr Selous at the Houghton Regis Morrisons in January, he witnessed the unpredictability of EDS first hand. At the Westminster debate, he explained: “I could tell that something was not right. The colour of her face was giving me cause for concern, and when she got up at the end of the meeting, she collapsed flat on the floor and fainted in front of me.”

After spending the day in Westminster, Alex said she was in “horrendous pain” which she likened to “torture”. But she added: “I will do it all again, every day if I had to.”

Mr Selous said: “Alex has been to see me on a number of occasions and is a courageous fighter living with a painful condition which the NHS has great difficulty in diagnosing. We need to educate doctors better about this condition and make sure the NHS can offer proper support to all these people whose condition is so misunderstood.

"If I am re-elected, I will follow up after the election to make sure we get the meeting with the minister and NHS England, who are the people we need to convince to make progress on this issue."

Alex said: “I've learned to speak up and get some purpose in my life, because it's horrible. I know I come across positive, but it's not easy and it's how I've learned to deal with it.”