A new member of the board

Christophe sent us the following text as an introduction:

The CSS struck me in April 2000. It was all very abrupt as I was professionally very active as a Chief Technology Officer in a TV company. I was working like hell, had many contacts worldwide and therefore traveling like hell too.

Being suddenly in that hospital, doctors around me, staring at me with a strange interrogative expression in their eyes was a shock. And I felt fire in my lungs. Any movement was requiring a huge effort. What does that mean?

It took time, about 6 months; hopefully doctors noticed that steroids brought relief.

From hospital to hospital, I finally had the luck to meet with the Man who knows: Pr. Humbert. He told me after 4 days of exams: I am a pneumonologist, I talked to Pr. Guillevin who is a specialist of vasculitis and our conclusion is that you have the Churg-Strauss Syndrome...

I wouldn't finish that story; you could find other patient stories on this website. They are all different but you may find some similarities.

The main issue is that the diagnosis is too long. This is a rare disease.
Another issue is that there is no cure. This is an orphan disease.

The disease made me lose my job. I had to stop working. I fell into depression.

As I was deep in the deepest depth, I suddenly grabbed an idea which was like a buoy for me. I decided to dedicate my knowledge and my energy, as weak as it has become, to help CSS patients all over the world.

I recovered slowly, battling with the Prednisone and the flares. In 2002, I discovered the CSSISG, it was such a help both psychological and physical. But it is only for english speaking people, there are so many CSSers around that can't speak english and need help. In 2005, Marian Mesker contacted me thanks to the CSSISG again. We discovered that we shared the same idea: to make it more international. We started working on a European contact list and she introduced me to the CSSA

I was still wondering whether to create a European association of patients or a French one. I tried the French association first. I rapidly realized that we are too few.

Marian asked me to write a book review for the CSSA. I did it for the book "Coping with Prednisone".

Jane asked me to join the board, I was first reluctant. Then suddenly I realized this is the way I was searching for. The way to help CSS patients all over the world. Jane was sharing the idea of making the CSSA an international platform. Then I finally accepted.

My mission, as I see it, is twofold:

1. European liaison, I'll do it with the help of Marian. You could find the first results of our effort in the local contact list which is at the bottom of the front page. The idea looked so good that it has been extended to Oceania, Japan and last but not least, Northern America. Many thanks to you all who volunteer.

2. Technical advisor, I'll bring my experience and knowledge of the Internet technologies to help upgrading the web site, which is already an excellent reference. My goal is to make it international as much as I can.

I hope I could help to provide large awareness of that rare disease, specially for practitioners who often lack of information and feel helpless in front of their patients. I hope I could offer some sort of guidance to CSSers and support research efforts toward the ultimate goal: find a cure.

Sincerely yours,
Christophe DeClerck