Dunstable woman collapses outside Downing Street while campaigning for treatment for ‘invisible illness’

A Dunstable woman fainted outside Downing Street as she was speaking up for those who suffer with the same so-called ‘invisible’ illness which caused her to lose consciousness.

Alex Akitici attended Parliament on Tuesday (November 21) to talk about her experience of hypermobile Ehlers-Danlos Syndrome (hEDS) - a group of genetic disorders which affects connective tissues supporting the skin, bones, blood vessels, and other organs and tissues. The disorder can lead to symptoms including pain, dislocations, curvature of the spine and degenerative joint and bone disease. Some rarer types can be life-limiting.

For Alex, the condition results in autonomic dysfunction – a nervous system disorder – which causes her blood pressure to drop, and subsequent fainting. She also suffers from headaches, speech disturbances and even paralysis.

The mum-of-two was invited to Parliament, after writing to MP Andrew Selous, to raise awareness of EDS. After addressing 25 MPs, she headed to Downing Street to hand in an almost 30,000-strong petition calling for a review of NHS services for those with Hypermobility Spectrum Disorders (HSDs), which includes hEDS.

However, as she approached Number 10, the campaigner fainted – a typical, everyday symptom of her condition. Fortunately, there was a wheelchair to hand and Alex was able to continue her visit.

Alex first began to suffer problems in 2015 when she began fainting without warning at home and work. After a first diagnosis of a migraine condition did not add up, a second opinion diagnosed her with autonomic dysfunction – and resulting EDS – following a series of tests.

Alex explained the condition has significantly impacted her day-to-day life.

“I have learned to manage my symptoms the best I can. I’ve spent our life savings on having a downstairs bedroom and bathroom built to remove the risk of using stairs. I have collapsed twice whilst going upstairs causing injury and distress to my family.

“The fainting unfortunately has not stopped and I have been advised it won’t. It can happen anytime, any place and they know me in my local supermarkets as queueing isn’t something I can tolerate without collapse on many occasions.”

Since her diagnosis, Alex has presented talks on her condition to colleagues, disability forums and the Rail Network.

She added: “I will keep campaigning to raise awareness of EDS and also make the invisible visible. There are so many that face prejudice due to invisible illness and also many that have spent years trying to obtain diagnosis and treatment. The message is also key ‘be kind’, we have no idea what someone could be going through.”

Unfortunately for Alex and other patients, HSDs does not yet have a formal diagnosis or treatment service in place within the NHS – something Alex and charity Ehlers-Danlos Support UK are advocating for.

MP Andrew Selous said he had not heard of EDS until Alex contacted him.

He added: “I wanted to help and suggested The Ehlers Danlos Support UK get its members to contact MPs and clinicians who are working to treat this condition to come to a reception in Parliament to explain more about it to MPs.

“I hope to organise a debate on the condition shortly so we can do our best to help Alex and others like her who live with Ehlers-Danlos Syndrome.”