Hello,
my name is Matilde Acosta, ISN
Support Group Leader for Venezuela. I have been a patient
of systemic scleroderma for
9 years.Nowadays I run the Venezuela
Scleroderma Association, an organization of my inspiration.
I wanted to do something sinceI could identify with the
loneliness that a patient feels when they know their diagnosis,
when they find out that there is no cure, and see that some
doctors have no interest in working with them since they
are a minority and there is no specific medication for their
illness. This leads them to depression, and the impotence
someone experiences when they feel there is nothing else
they can do.
I followed the Argentinian Association's lead, and I started
helping patients, giving them solace and a helping hand,
like they have helped me, by means of the webpage http://groups.msn.com/esclerodermiavenezuela/.
I will soon publish the first magazine which should expand
the educational outlook for everybody.
The associations from Colombia,
Argentina, Venezuela,
Puerto Rico, Spain, and the United States,
among others, are all in this fight, helping each other find
a helping hand, someone who will wish us well, who will help
us lift our fighting spirit, our self love, our hopes, our
happiness and love of all. "If we push together we'll
make it." You can reach me at matilde-acosta@sclero.org. |