The unknown GIST heroes

Heroes3I read it, to be honest, with mixed feelings. The stories about GIST patients who have distinguished themselves in their fight against GIST. For example, by obtaining funds or to promote GIST research. Or who personally had a tough fight and are honored for it.

Those thoughts I have, to be clear, not because of their performance. I do not wish to take anything away from what they have accomplished. Moreover, they usually do not set themselves the spotlights, but this is usually done by others. And that is also very human. We like to benchmark ourselves, or admire, to people who achieve exceptional performance. Be they athletes, explorers, scientists or …. or indeed yes, GIST patients.

Nothing wrong with that, you might say. But simultaneously, and there’s my “problem”, a rather lopsided picture. Because there are numerous other GIST patients who also have gone through deep valleys, or still go, and from which we do not even know they exist. Patients and caregivers whose lives are completely dominated by GIST. Because they want to live. Survive. And as long as possible. Like all of us.

Very occasionally you see messages from them. From GIST patients, mostly in countries that are not English spoken, who are fighting a lonely and determined struggle. We hear those messages actually quite by accident. Because they (themselves or a close family member or friend) do speak just enough English and also have access to a reasonably functioning internet. And so, they have a possibility to communicate with other GIST’ers.

In this case, communication means that at least you know that you’re not alone. That there are many others in this world who go through the same as you. Which in itself gives a good feeling. You’ll still must conduct the battle yourself, but at least you’re not alone. And with a little luck you can get information which will make your own life more bearable. Or can even prolong it.
Those are however the lucky ones. Because there are many more who have to live without support from others. Who also, as we all, have been told the message “Sorry, but you have cancer. And it’s terminal.” Coupled with the remark that in your case it’s called GIST: Gastrointestinal Stromal Tumors. And maybe even the statement that there are medications that can, at least temporarily, stop the growth of those tumors. And with that you stand outside again. On your own, with only the support of your direct family.

To give an example, to this end. Many people seek these days their information on Wikipedia. And indeed there you can find a reasonably comprehensive English page about GIST. Although peppered with a lot of medical terms, but still. And in addition there are other, sometimes much more limited, pages in 13 other languages. But not, for example, in Dutch (23 million speakers), Zwahili (140 million speakers), Indonesian (163 million speakers), Portuguese (217 million speakers), Bengali (250 million speakers), Arabic (353 million speakers) and Hindi (380 million speakers). In other words, referring to my previous blog, “the effects of Babylon.”

Imagine that you are diagnosed with GIST in a country where the medical care is at a lower level. Without medical GIST specialists who you can ask a question. Where the internet is maybe not always available. But even if the latter is the case, that you hardly can find information. Simply because it is not available in your language.
In those cases, you’re really lonely. And you have to suffer almost inhuman. Especially if, in addition, the medicines are difficult to obtain and / or the costs are so high that you can actually not afford them. And besides that, you also have no idea if, and where, there may be fellow sufferers around you.

I think it are precisely those GIST patients, our unknown GIST heroes, who should be put in the spotlights. Only, for this we of course first need to find them. Try to reach them. And that’s why this multilingual blog has been started. Because with this blog this is maybe possible.
Of course you may think, “Why should I? Because I personally already have access to all the help and information and speak enough English to understand it.” That’s possible, but if that is not the case, if you do look further than your own country, your own language, your own interests and want to help others, then that is also possible.

It’s actually very simple. You only have to post your own personal GIST story here on this blog. In English, but if possible also in one of the many other languages which are spoken at this world. And if you have placed your story, share that with family, friends, colleagues and acquaintances. Because the more these personal stories GIST are known, the greater the chance that we ultimately reach these unknown GIST heroes. So that they also know, that they are not alone.

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