Kay Julier

Hypermobile EDS (hEDS) is a genetic connective tissue disorder which can be very disabling. Symptoms can affect the whole body, including the joints, muscles, heart, and the digestive system. Recent statistics show that, on average, symptoms start at the age of 12, but the condition is not diagnosed until the age of 24.

There is no cure for hEDS, current treatments just manage the symptoms. The 12-24 project is raising money to research the potential benefits of nutrition on hEDS. Professor Qasim Aziz, a Neurogastroenterologist and specialist in EDS noticed a few years ago, that an improvement in diet led to an improvement in symptoms. This observation has now occurred many times in patients with hEDS. Lisa Jamieson, a pharmacist and nutritionist, has designed a nutritional intervention that they would now like to test scientifically. They feel very optimistic that this will lead to a significant advance in the way that hEDS patients are managed and helped.

Professor Aziz and Lisa Jamieson are bum-bling to raise money for the 12-24 project, in partnership with EDS UK. The project is urgently trying to raise £250,000.

Also in the 12-24 team are Dr Kate Barnes, Becca Hamway, Julia Tognarelli and Sarah Stuart. - Dr Kate Barnes said “As a GP and also a sufferer with EDS I am bum-bling to help support Professor Aziz and Lisa in their efforts to raise funding for this worthwhile study. I am becoming increasingly convinced that nutrition has an important role to play in this extremely debilitating condition.”

Becca Hamway commented “My wife has EDS, so I am very aware of the many and varied health problems it can cause – not least gastrointestinal issues, which mean that at times her digestion stops working. I’ve seen first-hand the effect that diet can have: some health foods are the opposite of healthy for EDS-sufferers; whereas some supposed food no-nos, can be beneficial. As yet, there has been very little scientific research into diet and EDS, so most sufferers rely on trial and error, spending years trying to work out what they should and shouldn’t be eating. I want to help raise money for the nutritional research as a) EDS doesn’t get the attention it deserves, b) it will help change lives.”

Julia Tognarelli joined the team after replying to our Facebook advert. She said “I was diagnosed with hEDS in 2016 after many years of unexplained medical problems. Thanks to advice from Professor Aziz I found nutrition improved many of my symptoms and issues and gave me a quality of life I’d never had before. I’m bum-bling because I wholeheartedly support this research and look forward to any new insights. I hope it can improve the quality of life for many others in the future.”

The final member of the team is Sarah Stuart, “I want to fundraise for EDS gastrointestinal research as I’ve experienced first-hand how disabling EDS can be, and the transformative effect diet & nutritional supplementation can have on EDS symptoms. Whilst it took years to reach a diagnosis of EDS and associated conditions PoTS & MCAS, I am lucky to have since experienced huge improvements and received brilliant support and advice from my doctors. I wish for other patients to experience the same. The nutritional effects on EDS symptoms are hugely under-researched. Many patients are left experimenting to find a way to digest food and absorb nutrients. Thanks to Prof Aziz & my nutritionist I am no longer reliant on baby food and soup. I’m now able to eat properly, and my nutritional deficiencies, bruising, wound healing, hair loss, energy and much more has improved. It has been surprising to both myself and my doctors quite how much nutrition has positively impacted my other symptoms, and the knock on effect this has in managing associated conditions.”

The 12-24 team would be very grateful for all donations, thank you.

Kay Julier