as small as a world and as large as alone

TIs there a difference between Joint Hypermobility Syndrome (JHS) and Ehlers Danlos - Hypermobility Type (EDS-HM)?Absolutely worth checking out.  You might have hypermobility syndrome, or you might have something more serious like Ehlers-Danlos or Marfan’s syndrome, both of which can be life-threatening.  To make matters more confusing, there’s a lot of debate as to whether hypermobility syndrome is just a mild variant of Ehlers-Danlos syndrome type 3.  

Believe it or not, there are people with Ehlers-Danlos type 4 (Vascular Type) who make it to late adulthood without getting diagnosed.  Generally it’s diagnosed when someone is either very small, or when they have ruptured blood vessels enough to die from it.  But increasingly they are finding people who have it who have not ruptured yet.  Donna Williams, a famous autistic author, recently found out she has type 4 without having ruptured yet, which explains a lot of her severe health problems.  (Including that when they opened up her uterus it was like… a mass of tissue and blood vessels that had all tangled together and they were surprised, very surprised.)

That’s very unlikely, but it’s still worth checking out.  I am urging my mom to get checked out after she got an aortic aneurysm which is more common in people with connective tissue disorders.  Which makes me suspect that it might be Ehlers-Danlos type 3 or type 2 that runs in my family – we already know some kind of hypermobility syndrome does.  Or it could just be a severe form of Benign Joint Hypermobility Syndrome, which is my current diagnosis in the absence of further evidence.

Even if you don’t end up having any of the non-benign connective tissue disorders, even BJHMS is something you should learn whether you have.  Once you learn you have it, you can learn precautions to take to avoid dislocations and deal with them when they do happen, you can warn medical professionals ahead of time in situations where they might occur, you can be aware that you might get arthritis in your 20s or 30s instead of your 50s, etc.  So all in all it’s good to have knowledge about these things.

Hypermobility Syndromes Association is a website that has a lot of good information.  

Some interesting articles there that might be useful:

• Is there a difference between Joint Hypermobility Syndrome (JHS) and Ehlers Danlos Syndrome - Hypermobility Type (EDS-HM)?
  
• Beighton Score (a simple scoring system used as part of diagnosing various hypermobility syndromes, although it misses some people who have hypermobility in different joints than are tested – I have a high Beighton score but my mom, who has more severe organ and skin involvement than me, has a lower Beighton score but more hypermobility in joints not covered by the Beighton… a good doctor will look beyond simply the Beighton if you have other symptoms)
• The Brighton Criteria for JHS (a more complex system of diagnosing hypermobility syndrome, which uses the Beighton as just one of a list of major and minor criteria, such that you can have a relatively low Beighton score and still qualify based on other symptoms)
• Help and Advice – an entire section of articles that will be useful to anyone new to hypermobility syndromes
• EDS and JHS – a section (which most of the above articles are from) about both Ehlers-Danlos and Hypermobility Syndrome, and also possible relations between them

Hopefully that’s useful information to look at, even if you don’t end up seeing a doctor.  When I was diagnosed, it was almost like an afterthought.  The doctor had me bend in a bunch of ways after getting me to admit I had widespread joint pain (I’d left the question unanswered on his questionnaire because I was afraid of admitting I had joint pain when I didn’t have arthritis… as soon as I admitted it he started testing me for JHS).  Then he said “You’re hypermobile” and moved on, just like that. I had to find out what that meant, on my own, like usual.

Given my mom’s severe symptoms, I really want to find out what it is that runs in our family.  After her aneurysm I’ve urged her to get tested, but it’s not easy for her to get tested in the rural area she lives in where a lot of doctors are indifferent to her.  She may need to wait until she goes to the Mayo Clinic to get tested for connective tissue disorders.

One thing that’s clear is I don’t have Marfan’s.  My body type is so much the opposite of the Marfan type it’s ridiculous.  (I’m short and fat with short fingers and toes and tiny hands and feet.  The only areas where I have anything in common are mouth and dental issues – high arched narrow palate, small mouth with overcrowded teeth, jaw deformities, etc.)

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