*eyes pop out*

Hon, wow! I've checked this group for the first time since... um... I
dunno, I don't stick around Yahoo much at all anymore either. I've
been hearing stories about you from Colin now and again. As for
active members, well, I'm not so sure any exist when I look about...
but oh well... the group is ticking over on it's own (or someone must
be looking at it now and again, I know I'm not, really...)

Anyway take care, good luck with the sky diving!
Dee

--- In butterflychildren@yahoogroups.com, hon_w.rm <no_reply@y...>
wrote:
>
> Hi everyone,
>
> Sorry it's litteraly been years since I last post anything on this
> group, there's no excuse really I just been a lazy sod!
>
> Anyway I would appreciate it if anyone of the active members who
> would like to take control of this group to benefit other's and
> themselves with advice and treatments for EB as I don't regularly
> check groups anymore. So if you would like to become a moderator,
> please email me and I can change the settings to allow you to take
> control of this group.
>
> My first aim when I started this group with my friend Colin, was to
> raise awareness and to give parents, sufferers and anyone else
> insterested, a place where they can discuss their experiences,
their
> treatments methods what works for them and what doesn't, ways to
> improve life and overcome it's burdens.
>
> I just seen the pictures posted by the Lutter's and it brought back
> memories when I visited Trevor back in 2000 with my friend Connie.
> The years has flown past, and when I look back I don't know where
it
> has gone!
>
> I'm happy that Trevor is doing well, I knew his a fighther all
along
> since I first saw him blowing raspberries at me and Connie lol.
>
> I have been using new dressings lately which seems to improve the
> wound management to some degree, I don't know if you have tried
these
> but it's worth a try to see how your sons/daughters or yourself
with
> EB take to it:-
>
> Meplilex Transfer (its a thin dressing that has a soft sponge feel
> and lightleys sticks to the skin but not so that it hurts when u
take
> it off!) It comes it different sizes and its rather expensive but
> it's worth it as it can stay on for a number of days depending on
how
> much the wounds exudes. If you have it on a number of days it's
best
> to soak it off when you want to replace it.
>
> Another dressings Im trying out now is one called:-
>
> ActiveformCool (the soothing hydrogel wound dressing) its part made
> of water and it's a gel type dressing, if you have wounds that are
> hot, because it's imflamed etc, you can leave this dressing in the
> fridge and then apply to the wound, and it will stay cool for a
while
> thus cooling the affected area.
>
> That's all for now.
>
> P.S Anyone like to sponsor me to do my skydiving challange in order
> to fundraise for DEBRA? yes.. I'm mad and it will hurt! lol