Re: FW: hirschbrungs diesease
From: Jake something (jakeftm@yahoo.com)
Thu Jan 17 02:17:11 2008
I'm not sure what is avaible there as i am in the
united states however i saw your email here and was
rather suprised to see it i was also born with Hd. I'm
27 now though but there is an HD group that you may
find helpful and may even find someone near you. if
your intersted please let me know its a yahoo group as
well my email is jakeftm@yahoo.com. If nothing else it
may give you the oppurnity to chat and talk with other
parents in your position. >
sam
Subject: hirschbrungs diesease
>
> hi i live in the uk and when my son was born it was
> the first time i had
> heard of hirschbrungs. no one in my family has had
> hirschbrungs. my
> son is now 2 years old and he has had been addmitted
> to hospital so many
> times now 2 times for his op's and 3 times because
> he had bowel
> infections where he had to be put on drips. he was
> also addmitted
> because he had very low blood counts, he had a blood
> transfusion. ever
> since his pull through op he has suffered from
> really bad nappy rash,
> the doctors say its a fungal infection and it is
> like fighting a losing
> battle. hes been on antibiotics and different kinds
> of cream. i would
> like to find out other peoples experience with this
> diease.
>
> i have noticed aswell that hardly anyone in mk where
> i live have heard
> of hirschbrungs. the specailist that helps my son
> is in oxford jr which
> is an hours drive from where i live. we have a
> hospital in mk but they
> dont have a specillist.
>
> i would be grateful to hear from anyone
>
> thanks sara
>
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