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Reply to topic  [ 8 posts ] 
 Whats so Benign about BJHS? 
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Spoonie in Training

Joined: Wed Nov 12, 2008 3:47 pm
Posts: 7
Post What's so Benign about BJHS?
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!

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Meg

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Undifferentiated connective tissue disease (likely SLE); CRPS; Raynaud's; Benign Hypermobile Joint Disease


Wed Nov 12, 2008 4:08 pm
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
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Location: Connecticut...part-time Texan...and French at heart :)
Post Re: What's so Benign about BJHS?
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.

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~Stephanie~

Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.

I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks :arrow:


Wed Nov 12, 2008 6:38 pm
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Serving Spoon
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Post Re: What's so Benign about BJHS?
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...

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Thu Nov 13, 2008 6:33 pm
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Spoonie in Training
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Joined: Sat Jan 20, 2007 10:47 am
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Post Re: What's so Benign about BJHS?
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.

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Ehlers Danlos Syndrome type III in all of its musculo-skeletal pain glory, Hashimoto's thyroiditis, POTS, restless leg syndrome, myoclonic spasms, cervical kyphosis, PFO, mitral valve prolapse, anxiety, PTSD, TMJ...

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Mon Nov 17, 2008 9:27 pm
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Baby Spoon
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Post Re: What's so Benign about BJHS?
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.)

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~Kelly~
22 yrs old

EDS Classical and Hypermobility type; Bipolar Disorder; CFS; Migraines; Arthritis; possible OCD; TMJ; chronic headaches; chronic pain...the list goes on.
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Tue Nov 18, 2008 11:03 am
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Soup Spoon

Joined: Wed Apr 26, 2006 8:45 am
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Location: London, UK
Post Re: What's so Benign about BJHS?
'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


Wed Nov 19, 2008 5:11 am
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Crystal Spoon
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Location: Connecticut...part-time Texan...and French at heart :)
Post Re: What's so Benign about BJHS?
Why can't they call it just one frigging thing?

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~Stephanie~

Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.

I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks :arrow:


Thu Nov 20, 2008 8:24 pm
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Spoonie in Training
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Joined: Sat Dec 13, 2008 5:44 pm
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Post Re: What's so Benign about BJHS?
Your rheumy is out of date, they have discontinued that term, its now only ehlers danlos hypermobility type

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Susan, fibromyalgia, osteoarthritis, ADHD, Discoid Lupus, hypermobility, MVP. Creative frustration due to extreme fatigue.


Sat Dec 13, 2008 5:56 pm
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