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does anyone know about ehlers danlos syndrome ?

2 replies

thriftychic · 22/11/2012 09:46

i might just be getting paranoid but this is on my mind ,

my eldest ds (17) , when he was younger he always had really bad frequent leg and ankle pains . the doctor put it down to flat feet and gave him insoles. he now only occasionally has achy ankles .
he also has bendy thumbs and can sit in a weird position because he has over rotated hips (think thats what was said )

he is very tall (even though we arent , i am 5ft 1) and when sitting his back looks quite curved and im always telling him to sit up straight. i once mentioned this to the doc who just said he needed to stop slouching. but im not sure thats it. my brother also commented on his back.

his skin is very soft , his hair very fine . i am worried it looks like its going thin as his dad started to go bald at 18 and it progressed quickly.
during puberty he got incredible stretchmarks all over his back .
hes prone to nose bleeds .

the other day his nails looked a little bluish and ive noticed that once before , a couple of years ago.
he feels fine , he says hes fine and doesnt want to go to the doctors , but im a bit worried and after googling i have started to wonder about ehlers danlos syndrome .

my younger ds1 (13) also has the bendy joints , neurologist spotted that

can anyone in the know give me any advice please ?

OP posts:
auntevil · 22/11/2012 09:53

Hello thrifty - go over to the hypermobility thread and post there. There are several posters who have EDS and can answer pretty much every question you might have - including who - by name - you should get referred to!
There are lots of variations of EDS, and many crossover symptoms. Someone on that thread will be able to support.

thriftychic · 22/11/2012 10:03

thanks will do Smile

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