Bone Density & hEDS/HSD
Osteopenia and Low Bone Density in Hypermobility
None of us writing this are doctors. This page collects what the published research actually says about bone density in hEDS/HSD, so you have something concrete to bring to a doctor.
Low bone density is usually associated with older age, especially post-menopause. Real data suggests it shows up significantly earlier and more often in people with hEDS/HSD - with a sex difference striking enough to be worth naming clearly.
How Common Is Osteopenia in hEDS/HSD, and Who Is Affected?
The same 2023 study of 327 hEDS/HSD patients from an Italian reference center found osteopenia (specifically non-postmenopausal osteopenia in women, or early-onset in men) in 40.85% of the cohort overall. It was more common in hEDS (52.87%) than HSD (32.54%), and increased sharply with age: 70.83% of hEDS patients aged 30 or older had it, compared to 30.77% of those under 30.
The sex difference was the most striking finding: osteopenia was found in 56.79% of hEDS females, compared to 0% of hEDS males in this cohort. A finding of exactly 0% in a real dataset is worth treating carefully - it may reflect a genuinely large sex difference, or it may partly reflect a smaller number of male patients in the study overall. Either way, this is a strong enough signal that bone density is not something to assume is irrelevant just because you are relatively young.
What to do with this
If you are a woman with hEDS or HSD, particularly if you are 30 or older, this research supports asking a doctor about a bone density scan (DEXA) earlier than you might otherwise expect to need one, rather than waiting until the postmenopausal age range where bone density screening is typically recommended by default. This is a reasonable, low-cost, low-risk test to ask about, and catching low bone density early opens up more options for managing it than catching it after a fracture.