In 2016 I wrote a blog post titled ‘Could Nutritional Supplements Improve the Symptoms of EDS?‘ It’s the most viewed post on this site and has generated the most comments and emails by far.
There is no treatment for EDS, so I was very intrigued by the idea that supplements could reduce symptoms. I sent the article to several doctors, including Professor Qasim Aziz, a neurogastroenterologist at The Royal London Hospital. Professor Aziz replied to say he’d observed a number of his patients improve after changing their diet. He’d begun working with Lisa Jamieson, a pharmacist with EDS who had learnt to manage her symptoms using diet while studying for a nutritional medicine MSc. Together they wanted to carry out a clinical research study into the benefits of nutrition on hypermobile EDS, but needed £250,000!
I had no experience of fundraising so I challenged my father to raise the money; he agreed as long as I helped (eye roll ?). We formed a steering group with the heads of the two EDS charities and John Molyneux, a businessman from the Isle of Wight whose grandson has EDS. We’ve fundraised in various ways, but mostly via a social media campaign for which we made a film (The 12-24 film). Making films has been a sometime hobby of mine for many years, and it’s the area of our campaign where I’ve contributed the most.
Our campaign recently reached its first anniversary, so we announced our fundraising total for the first time… a fantastic £201,000. I made a short film to announce the total, which you can view below. I made two versions, one for the U.K. charity EDS UK, and one for The Ehlers-Danlos Society which is based in the USA and needed the figures in dollars. I didn’t have long to make the film and zero budget, but I was pleased with the end result and I’ve had some very nice comments about it. The film was narrated by Ruby Jones who features in the 12-24 film.
Due to the complexity of nutritional research and the final design of the studies, the cost of the research has risen to £320,000, which is a big challenge. We’re very proud of our campaign and the total we’ve reached so far. We’re hopeful the studies will demonstrate that nutrition can be an effective management tool for the hypermobile form of EDS, which could improve the quality of life of the millions of people around the world who struggle with hEDS every day.
Thank you to everyone who has donated and supported our campaign. I hope you like the latest film.
Ceri.