Heart Valve and Cardiac Signs in Hypermobility: What the Data Actually Shows

None of us writing this are doctors. This page collects what the published research actually says about cardiac involvement in hEDS/HSD, so you have something concrete to bring to a doctor.

Mitral valve prolapse and aortic root dilation are both named in the official hEDS diagnostic criteria, which understandably makes people worry their heart is at real structural risk. The actual data is more reassuring than that worry suggests - though the symptoms that come with it are real and worth taking seriously in their own right.

How Common Are Real Heart Defects in hEDS/HSD?

A 2024 retrospective cohort study reviewed 568 adult patients at an EDS clinic who had at least one echocardiogram on record. It found aortic root dilation in 2.7% of hEDS patients and 0.6% of HSD patients, and diagnosed mitral valve prolapse in 3.5% of hEDS patients and 1.8% of HSD patients. Both figures increased somewhat with age and were larger in males. The study's own conclusion was direct: these data reveal a low prevalence of cardiac defects in hEDS and HSD.

A separate 2023 study at a different institution reviewed 75 hEDS patients with cardiac evaluations and found something worth naming clearly: even though the presence of significant structural cardiac abnormality was very low, cardiac-related symptoms were extremely common - lightheadedness in 80.6%, palpitations in 77.6%, fainting in 44.8%, and chest pain in 32.8%. Of 62 echocardiograms in that study, the vast majority (91.9%) showed only trace or trivial to mild valve changes, not a significant defect.

3.5% diagnosed mitral valve prolapse in hEDS patients (n=568, echo-verified)Knight et al., Frontiers in Cardiovascular Medicine, 2024

Symptoms Are Common, Structural Defects Are Not - Both Are Real

It is worth being precise about what these two findings mean together, because they can seem to contradict each other. Feeling your heart pound, getting lightheaded, or occasionally fainting is genuinely common in hEDS/HSD, and is real and worth managing - but it is much more often explained by dysautonomia and POTS-related mechanisms (covered elsewhere on this site) than by a structural problem with the heart valves or aorta themselves.

This distinction matters because hEDS is a different EDS subtype from vascular EDS (vEDS), where blood vessel and organ rupture risk is genuinely serious and requires different medical management. Conflating hEDS with vEDS-level cardiovascular risk can cause unnecessary fear; conflating hEDS symptoms with 'nothing structurally wrong so it's not real' can cause real symptoms to be dismissed. Both are worth naming precisely to your doctor.

What to do with this

The 2017 hEDS diagnostic criteria's inclusion of mitral valve prolapse and aortic root dilation means a baseline echocardiogram is a reasonable, standard part of an hEDS workup - not something to be alarmed about, but worth having on record. If you experience lightheadedness, palpitations, fainting, or chest pain, those symptoms deserve real medical attention and are not something to dismiss just because this research shows structural heart defects are uncommon; the POTS and dysautonomia research covered elsewhere on this site is often the more relevant next step for investigating those specific symptoms.

Sources referenced on this page