The goal of surveillance is to monitor your disease, looking for complications early (for example aneurysm formations)(1). If and when they are found, you can then design a careful plan of action with your Care Team. It is better to catch complications early. If a procedure is required, it is more optimal to schedule this as an ‘elective’ procedure at a facility with expertise in treating vEDS patients(1). This improves outcomes over emergency procedures at local facilities for several reasons. The first is that in an emergency setting there is not as much time to strategize the best approach for treatment. The second is that in an emergency setting the procedure (such as a surgery) is more likely to performed at the nearest hospital or facility, and likely performed by a physician who lacks experience in treating vEDS patients(1).
There are no current standards or guidelines when it comes to how surveillance should be done in vEDS(1). Some institutions perform no interim evaluations other than routine follow-up with physical examinations(1). Other institutions recommend yearly imaging with MRA or CT scans to evaluate the major blood vessels of the body(1).
(1) Byers PH, Belmont, J., Black, J., DeBacker, J., Frank, M., Jeunemaitre, X., Johnson D., Pepin, MG.,
Robert, L., Sanders, L., Wheeldon, N. 2017. Diagnosis, natural history and management in vascular Ehlers-
Danlos syndrome. American Journal of Medical Genetics Part C (Seminars in Medical Genetics). 175C:40-