I had a rheumatologist lecture me for 10 minutes about how I have Benign Joint Hypermobility Syndrome, but not to worry because it's benign. I swear he used the word benign about 25 times. Yes, it's benign because I'm not at risk for rupture of any big blood vessels, but chronic joint pain and a recent knee dislocation make me wonder....what's so benign about all this? Anybody else get this? Also, how do I find out if it's BJHS and not Ehlers-Danlos? Thanks!

Really nothing...that's why the EDS Gurus decided there was no such thing as BJHS...either you have EDS or nothing.

I was diagnosed with BJHS when I was 16...I was told that I shouldn't be in pain and that my joints should be staying in place...but they weren't.

It wasn't until I was 19 that I was diagnosed with EDS...because there were so many other issues I had...skin and systemic issues...that led to EDS.

Regardless of type, everyone with EDS is taught how to watch for signs of Vascular rupture...it's rare that rupture happens outside of VEDS...but people are often mistyped or there's type crossover.

From what I have read They have actually removed the word BENIGN from the title now it is just called Hypermobility Syndrome now, and like Reine said they actually yhtink there is NO such thing as HMS either and that it is a milder form of EDS...

It think the only thing benign about it is that it isn't malignant - likely to cause death in most cases or cancer related...

There is NOTHING benign about what you feel - it takes over your life you live in pain and with disability what is bl00dy benign about that...

My old rheumie used to us that term also, even after I had a diagnosis from a geneticist at stanford. I stopped seeing him pretty soon after. He didn't seem to take the dislocations seriously, or any of my heart issues, skin issues...

New doctor time? Hopefully it's possible. Unfortunately, it's not in my area. My poor GP deals with the majority of it all.

From what I understand, BJHS (or JHS, whichever it is now) isn't actually a defect in the collagen like EDS is...which means it doesn't affect the internal organs, just the tendons/ligaments/muscles around the joints. Which means that yes, you can still have dislocations like EDS, and it's not benign in terms of pain, BUT it's not likely to cause death from aneurysms/organ rupture/etc like some form of EDS.

This has been a big pet peeve of mine for a long time. Because it's termed "benign" (even if they don't actually use the word benign, when it's dx'd that's what your dr is thinking) and lumped in with EDS, then doctors assume that EDS isn't that serious either. (I'm using "doctors" as a general term, because it seems like the general population of doctors is sooo undereducated about EDS it's not even funny.)

'bjhs' IS a defect in the collagen!- and many many bjhs/hms ers have all sorts of 'internal/organ' probs due to the weak collagen-

but yep "death from aneurysms/organ rupture/etc" is highly unlikely/unusual/VERY rare-(but pity enough not unheard of...I know of one hmser that died due to perforating bowel)- just like it is v rare/unusual for that to happen in EDShypermobility type...
xxg

Why can't they call it just one frigging thing?

Your rheumy is out of date, they have discontinued that term, its now only ehlers danlos hypermobility type