Netherlands VHL meeting

I flew to Europe on Thursday night, arriving Friday morning in Brussels, where I was met by a friend of Chris Hendrickx, the chairperson for Belgium. I stayed with Chris and her husband near Antwerp for the night, and drove with Chris and her mother to the Netherlands on Saturday morning.

Saturday October 10 I attended a meeting of the Southern Netherlands VHL support group. There were more than 40 people gathered to greet one another, learn together, and play together.

This was the largest meeting to date, in part because they had planned a day with "youth activities" -- there were a dozen teenagers in the group who sat with everyone in the morning for presentations about pancreatic surgery and the research going on in Utrecht, and then after lunch went off to do some bowling together. They joined the group again at the end of the day for round-table discussions before we adjourned.

A surgeon from Utrecht spoke about pancreatic surgery, making decisions about whether surgery is needed and then how surgery is planned once the decision is made.

Ellen van Rooijen from Dr. Rachel Giles' lab in Utrecht discussed her work with zebrafish, a special fish they have bred that has a faulty VHL gene so that they can see the differences between the VHL+ fish (normal VHL genes) and the VHL -/- fish (VHL gene not working). Because these fish are translucent, you can watch the beating of their hearts and the flow of their blood simply by watching through a microscope in different colors of light.

After lunch there was a speaker for the adults, talking about issues in employment, and the rights of workers who have been out for surgery and want to come back to their jobs. He talked about temporary or permanent disability, and the responsibilities of both the worker and the employer. This was while the teens were off bowling.

Then the group was divided into three large tables: one of people with VHL themselves, one of spouses and partners, and a third of "others", mostly composed of new spouses of people who had lost their first spouse to VHL, and who had step-children with VHL. For each group there was a professional to help answer questions, but mostly the group interacted and supported one another.

The teens bounced back into the room with great energy and formed another table for kids, with and without VHL.

I brought them greetings from the US, and showed them the Kids' Handbook which was a great success. They already have a volunteer who is happy to translate it into Dutch! We will make that happen within the next few weeks.

I went home with Rachel Giles, who is the head of VHL clinical care in the Netherlands in addition to heading a laboratory of VHL research at the University of Utrecht. I am staying with her and her family near Amsterdam through Monday, then off to Germany.