--- In ehlersdanlossupportclub@yahoogroups.com, "cindy clark" <c-
clark05@c...> wrote:
>
> Hi Sheena, I'm Cindy
> We have either type Classical or 3. The docs don't seem to agree.
I don't have much pain, but my 18 year old son is having it really
bad for 4 years now. He is homebound. He hasn't gone to school in
almost 4 years due to pain. This syndrome can be cruel to some, can't
it? It doesn't seem fair. For my boy, his knees are the worst. But
basically every major joint and some small ones are affected. He has
had to take narcotics for a long time now. So how do you try to help
your pain? Bracing? meds? exercise? Nutrition?
> Your not alone by any means. From all the EDS boards I'm on,
there about 2000 of us. And there other boards I haven't bothered to
join. There's always someone that can relate to what your going
through.
> Cindy
>
>
>
> ----- Original Message -----
> From: smjbr04
> To: ehlersdanlossupportclub@yahoogroups.com
> Sent: Thursday, January 05, 2006 12:10 AM
> Subject: [Ehlers Danlos Support Club] hi i have eds mutated
classic type
>
>
> frist sorry for the spelling. i am 23 and have a beatiful
daughter. she
> is not showing any sings of have eds (thank god). it was heard
growing
> up with no one to relate to. and i thought i was the only one.
but it
> brings me to tiers to know im not alone. my husband is the must
> wonderful man. but i still would like to have some one to talk to
that
> understands what i feel. and painful it is.
> thanks for starting this so so many of us are not alone.
>
> p.s. im sheena
>
>
>
>
>
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>
Thanks Cindy,
I was a swimmer in high school and im getting back to the pool. i
felt so much better when i was thinner. and i do take aleave. it is
really hard on me becuase im the only one in my family with eds. i
was told at 12 then i got the difenate from gene tests when i was 20.
when i was told that i have eds i did research to fine more like me
and it was just now that i am finding people.