Liz Twist

It is a pleasure to serve under your chairship, Ms Furniss. I congratulate my hon. Friend the Member for Cannock Chase (Josh Newbury) on securing this important debate. Over recent years, I have been contacted by a number of constituents with EDS, many of whom have severe health issues because of the condition. Indeed, many constituents have asked me to speak in this debate. A member of my staff team suffers with EDS, and with her permission, I can say that I have seen over recent years just how it has affected her, and how it has progressed. Ehlers-Danlos syndromes, also known as EDS, have a profound impact on people’s lives, from chronic musculoskeletal pain and exhausting chronic fatigue to severe gut issues, allergic responses and immune system dysfunction. As we have heard, EDS has for a long time been considered a rare disease, which means that fewer than one in 2,000 people are either diagnosed or very likely to be diagnosed with it. As a recent former chair of the all-party parliamentary group on genetic, rare and undiagnosed conditions, I have had the opportunity to meet and speak to support groups for people with this condition about their experiences. However, a 2024 study of 300,000 GP patients in Northumberland found that as many as one in 250 people might have some form of hypermobility stress disorder—that is just those with a diagnosis. The true prevalence has been estimated at between 1% and 4% of the population. Getting a diagnosis is a massive challenge for those with EDS. For some patients, it can take between 10 and 23 years after the onset of symptoms to get a diagnosis—that is up to 23 years of pain and fatigue before they can even start to manage the condition.