Hans Keulen

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My name is Hans Keulen, I am 52 and living in a small town near Eindhoven in the Netherlands. I am self employed and working in the IT business for most of my life.

I was diagnosed with a clival (skull base) chordoma in june 2009. Because the tumor was compressing my brainstem I had a lot of symptoms and was very near passing away before I found a cure. Luckily surgery had good effects and the only permanent damage (at this moment) is palsy of one of the cranial base nerves resulting in loss of movement (and hence usability) of my right eye.

I am searching for a way to spread more knowledge about Chordoma. I noticed that in the Netherlands very little is known about Chordoma and therefore it is very difficult to find a good treatment (and to get the insurance paying for it).

As Chordoma is a rare disease, even on European scale, I am thinking about creating a European branch of the Chordoma foundation with a European (multilanguage) website. I am searching for other European patients to cooperate on that goal.

Money keeps the world go round. And even spreading the word will cost money, let alone for research etc. Luckily there is a growing interest in Europe for rare diseases (they call it orphan diseases here) so it maybe even possible to get some money from European institutions.