Marlies Allewijn

Posted by Erica Roks on Friday, November 2nd, 2012 | Comments Off on Marlies Allewijn

Imagine

On the 18th of November 2011, The Dutch Arthritis Foundation (DAF) celebrated its 85th anniversary. But is that worth a celebration? ‘Actually no,’ said Lodewijk Ridderbos, president of the DAF. ‘We shouldn’t be celebrating until there is no more Arthritis.’

Of course I agree. We shouldn’t get the party started too soon. But, I still was pleased the DAF decided to organize a modest celebration anyway. I like to party, you know. So, that is why I went to The Hague, together with other patients, volunteers, researcher, doctors and Queen Beatrix.

During the meeting  several people were honored with a Royal Decoration. Further the company NOAB  won the Support Award, because of their great help and support to their employee with arthritis. But, also a short video was shown about the history of arthritis and how the DAF was founded in 1926. I saw really sick people with deformed hands.  They had to get hospitalized  for six months in a place called Sole Mio. They had to lay in bed all day. Actually there wasn’t anything anyone could do for them.  That scared me a bit. On the other hand it made me feel glad I was diagnosed in 1990 instead of 1926. No medicine, living in Sole Mio? Imagine!

For me the highpoint of the celebration was seeing Berent Prakken entering the stage. He has been my doctor as a child, so we go way back. He was handed a big cheque. Literally.  But the amount on it was huge as well: One million Euro’s for UCAN-U.

‘JIA isn’t a popular disease,’ Berent Prakken said. Yes, I can think of things way more hip to tell on the playground. Because the response often is: ‘Huh, I thought only grandma’s had that.’  But I don’t think he meant that. JIA isn’t popular anywhere.  There simply aren’t enough children who have arthritis. So they  often are forgotten. (??)

I was diagnosed when I was twelve years old. And thus, I can tell from experience it is hard sometimes to have a chronic illness. Especially as a child. As hard as you try to be just the same as everybody else, you are always a bit different.  It is hard having to take medicine, just to be able to function; go to school. As a young and proud mum myself, now  I can also imagine how my parents must have felt. Seeing me in pain. Seeing me having to take all those medicine. Seeing me not doing well.

It was confronting to hear Berent Prakken say that all children are treated the same as adults. Simply because there are no medicine especially for children. It’s not only confronting, it is scary even.

That is why I am very pleased with the initiative of UCAN-U. Ambitious researchers  are determined to make the difference, because as Berent said in his speech:  ‘The children deserve it.’

UCAN-U makes me feel hopeful, confident even, for the future. I already begin to fantasize how it could be. Me without arthritis? Children without arthritis. A world without arthritis?

Imagine that!


Erica Roks

  
Login