Sher hi and welcome to the group:)
Not sure there is anyone on the site with Gorlin syndrome but when I
was researching the various syndromes, I am sure I came across
something about it on the net. I'm sure you have checked it out, but
could your docs not refer you to the docs who may have dxd other
cases (I know it is rare) and maybe put you in touch with others in
the same sit?
Just a thought although you may have already tried.
But welcome anyway. The group is not always that verbal but we do
try and help each other.
Miranda
-- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sweetie"
<sherylac23@h...> wrote:
>
> Hi, I'm Sher, my 3 kids and myself all have Gorlin Syndrome, and
> would like to talk to others who have it..never have before..and
> would like to get some support with it..Thanks:-)