The Ehlers-Danlos Society is excited to announce a new hypermobile Ehlers-Danlos syndrome (hEDS) research study, thanks to a generous $2 million donation. Part of an overall $6.7 million donation for research from the Mike and Sofia Segal Foundation given in December 2023, this study aims to identify targeted therapies and better management strategies for people with hEDS and upper gastrointestinal concerns.
If you have hEDS, you might also experience other health issues. These can include:
- Problems with the autonomic nervous system, like postural orthostatic tachycardia syndrome (POTS)
- Immune system issues, such as mast cell activation disorder (MCAS)
- Digestive system concerns, including abdominal pain, leaky gut, food intolerances, and irritable bowel syndrome (IBS)
- People with hEDS often suffer from functional dyspepsia (FD), a condition that causes symptoms like stomach pain, bloating, and acid reflux, especially after eating. Recent research suggests a link between FD, leaky gut, and mast cell activation in people with hEDS. However, we don’t fully understand how these conditions are connected.
To learn more, researchers plan to study different subgroups of people with hEDS to see how they are affected by conditions like POTS, MCAS, FD, and leaky gut. This will help clinicians understand the full picture of how these conditions affect FD in people with hEDS and how this can influence treatment options.
Participants cannot join the study at the current time. If you are interested in taking part in future research however, The Ehlers-Danlos Society has a global registry you can join here.
