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Why an international GIST Reality blog?

GIST_Bracelets_2011_575pixGIST is a rare type of cancer. According to statistics, there are, for example, in the Netherlands and Belgium annually about 400 new GIST patients. Which also means that in total there should be at least around 2000 GIST’ers, while the Contact Group has slightly more than 320 members. It’s a clear confirmation that GIST is hardly known in the “normal” world.

Perhaps because patients, to the outside world, live as “normal” people (or in any case, they try). And from the outside it’s often difficult to see that the disease affect them. But that does not mean that GIST has no impact on your life. It still is a deadly disease.

writingAnd so the idea arose to combine those personal experiences and stories of GIST’ers to create more, easily accessible, public information. Not only for GIST patients but also their families, friends and others.

And when multiple GIST’ers contribute with real life stories, you create a sort of “GIST Reality blog”. Just like in a reality series on television it gives others the opportunity to follow the “reality” of GIST patients. Focusing, in particular, at the people themselves.

But in addition, we want to reach out to GIST patients all over the world. Not with difficult medical terms and explanations, but information about us, the GIST’ers. Who we are, how we live, fight, cry and find hope. And maybe in the (near) future  witness the development of a definite cure for GIST.