It is a special moment, when the chairman of the Dutch Contact Group GIST comes to visit me. Not so much by his position as chairman, but because he is another GIST patient. Someone who in regard to this disease has the same feelings as you. And that means that you talk in a different way. Whereby it’s a bonus when he also appears to be a friendly, intelligent man. With who I have some striking similarities.
We both have a mutation in exon 18 of the PDGFRA gene. And since about 80% of all GIST patients have a mutation in the KIT gene and only 5-10% of the PDGFRA gene (all the others are classified as “wild type”), we are among those with a rare tumor yet a little bit more exceptional.
Personally, I thought that with my “Sister Mary Joseph nodule” I still scored another point in the area of exceptions, but Gerard told me that there were for him also some clear indications that there were hereditary factors. Which, fortunately, occurs rarely with GIST. Well, every man meet his match.
But this was of course not a contest. It was an introductory meeting to see what we could do ourselves to increase the knowledge about GIST. In its broadest sense. A conversation in which soon the use of the internet prevailed. We agreed that we could find opportunities there. To reach other GIST patients, to raise awareness of GIST in the “outside world”, about the tremendous opportunities to gain new insights from the stored data. In short, to take action ourself and not just passively wait for what the future will bring.
We were also agreed that it should thereby not be limited to the Netherlands and Belgium, or even Europe, but we should include the whole world. Not for ambitious reasons, but purely practical. With a rare disease you form in your own country only a small group, however, all over the world there are many thousands of GIST patients. And to that end, without disposing the efforts and capabilities of the Kanker.nl site, we think that there are probably more (or also) possibilities in the Life Raft Group. Which is already a global organization that is trying to find ways to cure this type of cancer and to help people with GIST.
It was all in all a pleasant visit and a useful conversation. The beginning of a co-operation from which much can come forth in the future. An opportunity to participate actively in the fight against GIST and not a priori resign ourselves by the diagnosis of “incurable”. Maybe not for us, but at least for future GIST patients.