April 2012

Spanish-speaking GISTers create an online home for themselves

Some of our GIST friends might think it was fortunate that my daughter Carolina was diagnosed with GIST in the United States. The truth is that she, like so many GISTers in America and internationally, was actually misdiagnosed, but it is fortunate that she lives in the United States where she has insurance to help her pay for her treatment.

The true best thing in this terrible and difficult process is as a caregiver I can speak English. Because of this, I found the Life Raft Group and all the information and support we needed to define my daughter’s best possible treatment.

This was three years ago. At that time, I could not find any other GIST patient in my country, Bolivia. I found one in Colombia and immediately contacted him. Shortly after, I learned of another one in Uruguay.

Later, I found other patients in other Spanish speaking countries. All of these people had one thing in common: Almost no access to GIST information in Spanish, and therefore, incorrect treatments, avoidable surgeries, and even early death. As a group of Spanish-speaking people, we understood that the most powerful tool against this disease was information, and decided to create a listserv (email group) in Spanish.

We are very proud to officially announce that our Spanish email community has been running since January 6, 2009. Most Spanish-speaking patients are not used to communicating and being part of support groups, but nevertheless, our listserv is starting to give important information to our members and gradually increase membership and participation. We have already translated some pamphlets and articles, and answered many questions that our Spanish-speaking patients have.

Our goal is to reach patients in all Spanish-speaking countries to create a wide-reaching network of support, and together fight against the disease in every possible way.