Should the EDS patient be concern about the potential for heart problems?

All people with EDS should have a routine physical examination that includes an assessment of blood pressure and auscultation of the heart (listening to the heart). At this point, unless there is a rhythm disturbance (irregular heart beat) or a murmur, there is no consensus in the literature what people should have further examined. This is an emerging field. Studies are now being done to assess if MRA, for example, would be helpful in imaging and following people with Vascular EDS (type IV). Some people with Classical EDS (type I) appear to have a risk for aortic enlargement, but who and what proportion are not known so further study is needed. Answered by Peter Byers, MD

A routine noninvasive cardiovascular evaluation should be performed in all EDS patients in order to exclude valvular heart disease and dilation of the aortic root or other vessels, including the coronary arteries. [DiMario et al., 1988 Jpn Heart J 29 (4): 491–6]

Due to the recent study [R. Wenstrup et al., 2002], looking at the incidence of aortic root dilation in non-Vascular Type EDS (22% in Hypermobility, 33% in Classical) Dr. Lavallee recommends ultrasound imaging the heart and aorta every two years for most patients and yearly ultrasounds for those with known dilatation, Vascular Type, hypertension, involved in a highly dynamic sport or diabetic. Answered by Mark Lavallee, MD, FACSM

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