Understanding the interaction between psychological profiles, autonomic, endocrine, and immune systems that leads to gastrointestinal symptoms in patients with hypermobile Ehlers-Danlos syndrome 

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. 

Key Aims  

This study, led by Professor Qasim Aziz at the Wingate Institute of Neurogastroenterology, London, UK, has two main goals: 

  1. Identify Different Subgroups: Prof. Aziz and colleagues want to find distinct groups of people with hEDS and FD who have similar overlapping conditions like IBS, autonomic symptoms, allergic reactions, and pain sensitivity.
  1. Understand Body Responses to Eating: The team aims to study how these subgroups respond to eating, focusing on how the gut, heart, and immune system work, changes in gut permeability, immune reactions, and how they feel gut sensations.

The study will recruit patients from existing databases who have consented to be contacted for further research.  

Why This Study Is Important 

To address these knowledge gaps and improve treatment options, it’s crucial to understand the mechanisms behind FD in hEDS. Since a one-size-fits-all explanation is unlikely, the researchers plan to conduct a detailed analysis, identifying subgroups with similar physical traits such as POTS, MCAS, FD, and leaky gut. This approach will help pinpoint the reasons for symptom development, leading to more personalized and effective treatments. In summary, studying FD in hEDS is essential because it significantly impacts nutrition, healthcare use, and quality of life. By uncovering the underlying mechanisms through this detailed analysis, we hope the study finds targeted therapies and better management strategies for this complex condition and provide insights that may benefit other types of Ehlers-Danlos syndromes and hypermobility spectrum disorders. 

Expected Outcomes 

The hope is that the study will show how conditions associated with hEDS, such as POTS, mast cell activation disorders, pain sensitivity, gut symptoms, and stress interact. 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. 

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