7yr old newly diagnosed EDS.... help....drs differing

September 25, 2001

Hi Amy,

I think Glenda described " things " *very* well...I have HEDS, and was

*very* hypermobile as a child too (only started the real " stiffening " in

last app. 8 years, I'm 46), but I didn't have sub or dislocations at her

age either,(I did have " weak " ankles which " went over " a lot...running was

a real challenge!) however,I DID, start have some very serious and painful

dislocations when I was a teen and by my early twenties had to have knee

surgery to " shorten " the ligaments around the knee (I didn't/don't know

what the exact medical terminology for my severe " outside " dislocations

above the patella were...) that surgery *has* held, however I am now

experiencing other problems with the same knee... " jars " , clunks,

locks,etc... I have other problem areas as well...including a lot of wrist

/thumb pains....I twirled baton as a child...not a good idea...had I

known...I was only diagnosed with HEDS 2 years ago....as a child and with

the med proffesions' ignorance of EDS....all my queries as to what would

happen as I grew up were responded to with pretty much a shrug of the

shoulders...and often as various symptoms and pains ensued they were

pretty much dismissed or minimally understood or attended to...

So it is great that you are at least able to learn and assess your

children as they grow, I would tend to err on the side of caution because

of how it has affected me and it seems true that the more you did as a

child the higher likelihood of early onset osteoarthritis...as well as

fibromyalgia (which I also have)... many who have participated in Ballet,

gymnastics, etc...seem to often have a worse time of it as an adult.

Certainly you want her to get exercise and to enjoy herself...so if

you are able to > help direct her towards the " less harmful " things other

than the twisting, flexing, stretching or impact types of things...it

may be well worth it....we pay for what we do it seems...

I hope you are able to find some help and comfort here ...I find this

group to be very supportive and as informative as possible...

all the best,

Cheri

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