elcome...my hope for this club is exactly what
you asked for, and what you wrote...as you an see
it's been a slow start!<br><br>i understand your
feelings...my mom has had SD for 15 years now, but her's has
been external...her fingers started the same
way...cold and purple, even if she just went to the
basement, or got something out of the freezer...<br><br>her
fingers, adn toes are now taunt, leathery skin, adn the
rest of her skin seems to be shrinking...so far her
internal organs are ok...<br><br>i support my mom by being
there, helping where and when she needs it..being active
in her doctors appointments, and knowing what's
going on without crowding her...she knows she can talk
to me anytime she wants...<br><br>we are about the
same age...i am 25...i barely remember my mom
"normal", and so it is with my sister who is 21.
<br><br>have you visited any of the links listed on the links
page of the club...maybe you can find something there
to help you too...<br><br>thank you for sharing with
us...that's what i hope this club can be all about...