I'm bumping this now.
Having learned a lot in the recent few days about JHS and EDS, after discovering the
degree to which my DD14 is hypermobile (she can do many of the SERIOUS, major-league contortionist/freakshow things that you can find on the internet.... like, er, putting the her heel against her sternum, for example...)
We
both have
Beighton scores that are 7-9, depending on hormonal state (which relaxes or tightens ligaments), and those are not particularly hypermobile joints for either one of us.
Other things that I simply had no idea could be related to a connective-tissue defect:
a) thermoregulation difficulty
b) bleeding, esp capillary bleeding abnormalities in the extremities
c) VERY easy bruising
d) lack of sensitivity to
topical anesthetics-- I've never (nor has DD, in talking to her) been "deadened" completely for dental work, but I
have had dentists give me enough of the stuff to fell a horse and leave it wonky for 18+ hr. I just thought that was a pharmacology quirk which was familial.
e) Long, slender arms and hands-- my DD's hands are fully arachnodactyl, and she can easily do that circumfrence thing with her pinky and thumb at the wrist-- heck, she can do it up part of her forearm and over her HANDS at the knuckles.
f) stamina and handwriting issues in spite of having a primary teacher (my mother) truly perfect her grip and ergonomics (it just didn't help).
I can definitely identify the family members who are affected. My mother, and two of her six siblings, as well as their children.
So many people in that group have early onset osteoarthritis and chronic pain-- often pain that started when we were in our teens or twenties.
We're awaiting referral. I really hope that we're dealing with benign hypermobility, but I just don't think so. I truly think that it's
a type of EDS. So glad that I never pushed DD to participate in sports.
It's also been amazing to me the difference in her productivity and resistance to doing tasks assigned to her, just
treating her as though this IS in fact a set of challenges for her, and allowing her to use accommodations like writing less, and taking frequent breaks. She is SO much happier now that she feels like she has a
reason for her lack of hand stamina-- and our blessings to only practice the piano for 20 minutes at a time. We're going to try some of the
recommended ergo things for her hands in terms of handwriting.
