January 2026 Research Update

This month added a clearer picture that vascular Ehlers-Danlos syndrome (VEDS) can look different in men and women, and those differences may relate to both which blood vessels are affected and the overall risk of death. In a large group of people with COL3A1 variants, men more often had disease in the aorta and arteries supplying the abdomen, and they had higher all-cause mortality. Women, in contrast, more often had certain vessel problems closer to the head and heart, including carotid-cavernous fistulas and spontaneous coronary artery dissection. [1]

In this cross-sectional snapshot of 557 people in a VEDS natural history study, aortopathy and iliac or visceral artery disease were reported more often in men than women (74.2% vs 57.9%), and men were diagnosed with major artery problems at a slightly younger average age. All-cause mortality was also higher in men than women (32.3% vs 20.4%). These results describe patterns seen in this cohort, and they help explain why different people with VEDS may have different "hot spots" for vascular complications. [1]

For patients and caregivers, this mainly adds understanding rather than changing care right now: it supports the idea that VEDS risk is not identical across sexes, and that the most likely vessel problems may differ for men and women. The evidence here comes from observing people at a point in time, so it cannot prove why these differences happen, and it does not tell what will happen to any one person. Still, having clearer, sex-specific patterns may matter in the future for research that aims to predict risk more accurately and to design studies that fit the different ways VEDS can present. [1]

This month included an individual case showing that major open aortic surgery can be performed in a person with VEDS and complex narrowing of the mid-aorta, with a smooth early recovery in that report. The same case also shows that follow-up procedures may still be needed later, because vessel connections can narrow over time. Taken together, it is an example of what can be possible in highly specialized settings, but it does not tell how often similar outcomes occur. [2]

In this report, a 19-year-old female with a COL3A1 variant underwent open thoracoabdominal type II aortic replacement using multiple organ-protection steps during surgery. The reconstruction and early postoperative course were described as complication-free, but she later needed an endovascular procedure for narrowing at the surgical connection to the right renal artery. The authors emphasized that some complex aortic problems may not be suitable for endovascular-only approaches. [2]

For patients, this is early, individual evidence that mainly matters as an example rather than a general expectation: it shows one pathway used for very complex aortic disease in VEDS and one possible later issue (narrowing at a vessel connection). Because it is a single-person report, it cannot predict outcomes for others or indicate which approach is best. It may matter most for future research and for building shared experience about which vascular problems can be handled with endovascular procedures versus when open surgery is used in complex hereditary aortic disease. [2]