Raising funds for vital research to help make lives better
Copyright – EDS UK – supported by The Ehlers-Danlos Society
Please help young people like these get their lives back.
This short film marks the start of a major fundraising campaign to pay for research to test whether dietary changes can reduce symptoms and improve quality of life for people with Ehlers-Danlos syndromes. Professor Qasim Aziz at Barts and The London School of Medicine & Dentistry has been caring for patients with EDS for many years. He has heard consistent stories of his patients’ symptoms improving with a change of diet. Some patients have improved a great deal and are living happy lives again. It’s now time to test, in a scientific study, whether changes in diet really can improve EDS symptoms in adults — but we need to raise the funds for this to happen.
Why “12–24”? Because latest statistics from Professor Aziz’s London clinic show that, on average, EDS symptoms start at the age of 12 but the condition is not diagnosed until the age of 24. The “12–24” film introduces us to Ruby, Rudi, Lucy, Bethanie, and Cat. They all have EDS, and their lives are tough. They tell their stories, which sadly are very typical of many young people living with EDS.
We’d like to thank Bethanie, Cat, Lucy, Ruby, Rudi, Lisa Jamieson, and Professor Qasim Aziz for appearing in “12-24.” Creative Director Ceri Teasdale. Produced by David Teasdale. Directed by Jonah David Klein.
The “12–24” film is a key part of the fundraising campaign to aid research into the value and impact of diet to relieve the symptoms of hypermobile EDS (hEDS). The campaign is led by David Teasdale, Ceri Teasdale, and John Molyneux, working alongside The Ehlers-Danlos Society and Ehlers-Danlos Support UK.
- Professor Aziz discusses GI complications and EDS in “Association between EDS and Gut Problems: Mechanisms and Management”.
- Dr. Heidi Collins discusses “Diet and Supplementation for Persons with EDS”.
- Lisa Jamieson discusses “Why nutrition is important”.
How Can You Help?
We are urgently trying to raise £250,000 (approximately US$335,000) for research to look at the effects of changes to diet on the symptoms of hypermobile EDS (hEDS).
hEDS is also associated with a range of gut disorders, including acid reflux and irritable bowel syndrome. There are no drugs that target the connective tissue abnormality. Current treatments include medications to reduce symptoms, alongside physiotherapy for muscle and joint issues.
Good nutrition is essential for connective tissue repair and general healing. Certain nutrients are needed for the body to make collagen and support connective tissue function. Identifying specific nutrients needed for connective tissue function is important.
This planned research will be conducted by Professor Qasim Aziz and Lisa Jamieson at the Wingate Institute of Neurogastroenterology, Barts & The London School of Medicine & Dentistry, Queen Mary University of London. The study will trial a diet-based nutritional intervention, to determine whether symptoms can be reduced in adult hEDS patients. This intervention has the potential to improve quality of life of patients with hEDS, through simple, inexpensive but effective dietary measures, while reducing treatment costs.
Please help us make this research possible by donating now.