30% of Patients with Hypermobile Ehlers-Danlos Syndrome Also Have MCAS

Key Findings: 

- 30% of Patients with hEDS Also Have MCAS
- Wealthier Patients More Likely to Receive Diagnosis
- Costs Significantly Higher for Those with MCAS and hEDS

Significant Overlap Between hEDS and MCAS Revealed

A recent study of over 37,000 hospitalizations in the U.S. has revealed that nearly 30% of patients diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) also have mast cell activation syndrome (MCAS), highlighting a significant overlap between these two complex conditions. The findings suggest that wealthier patients with private insurance are more likely to receive a diagnosis and specialized care for both hEDS and MCAS, raising concerns about healthcare access and equity.

The study, presented at the European Alliance of Associations for Rheumatology (EULAR) Congress, examined data from the National Inpatient Sample (NIS) between 2016 and 2018. Researchers identified 35,115 patients with hEDS and 3,630 patients with MCAS, with 29.8% of those with MCAS also diagnosed with hEDS. This overlap increased significantly over the three-year study period, reflecting a growing recognition of the link between the two conditions.

‍

Wealthier Patients More Likely to Receive a Diagnosis

One of the study’s key findings was the strong association between socioeconomic factors and diagnosis rates. Patients from the highest income brackets were far more likely to receive a diagnosis of both hEDS and MCAS, with 47.4% of patients in the top income quartile. Additionally, 67.6% of patients with both conditions had private commercial insurance, compared to just 52.4% of patients with hEDS alone.

“These findings suggest that patients with better insurance coverage and higher incomes are more likely to access the specialized care needed for diagnosing these overlapping conditions,” said Dr. K. Mathias, one of the study’s lead authors. “It raises important questions about disparities in care and the barriers faced by patients with fewer resources.”

‍

Higher Healthcare Costs and Longer Hospital Stays for people with hEDS and MCAS

In addition to the socioeconomic disparities, the study found that healthcare costs were significantly higher for patients with both hEDS and MCAS. On average, hospitalization charges for patients with both conditions were $64,445, compared to $54,782 for those with only hEDS. Furthermore, patients with both conditions had longer hospital stays, averaging 6.4 days compared to 4.9 days for hEDS-only patients.

Despite these higher costs and longer stays, there were no significant differences in mortality rates or overall comorbidity burden between the groups. However, the study emphasizes the need for further research into the shared mechanisms of hEDS and MCAS, as well as the development of consistent clinical guidelines for diagnosing and managing these overlapping conditions.

‍

Call for Greater Awareness and Equitable Access to Care

“These results underscore the need for greater awareness and equitable access to care,” added Dr. Mathias. “As the connection between hEDS and MCAS becomes more widely recognized, we must ensure that all patients—regardless of socioeconomic status—can receive the proper diagnosis and treatment.”

‍

Reference:‍

Mathias, K., Mantha, A., Mathias, L., & Arkfeld, D. "The Relationship of Mast Cell Activation Syndrome and Hypermobile Ehlers-Danlos Syndrome in Hospitalized Patients in the United States." Annals of the Rheumatic Diseases (2021). DOI: https://doi.org/10.1136/annrheumdis-2021-eular.3177

‍