VHL in Germany

Dealing with Psychological and Social Aspects of the VHL Disease

After several years of local activities we managed to establish our German-speaking VHL-Support Group in October 1999. Currently, we have more than 140 members from Austria, Germany and Switzerland.

Thanks to the efforts of Prof. Neumann at the Freiburg University Hospital, treatment of VHL in Germany seems to have reached a comparatively high level, but since Freiburg is in the Southwest corner of Germany, one of our aims is to spread information out among all the professional members of the health care system, throughout every part of Germany, Austria and Switzerland. Major vehicles are our newsletter (published quarterly), our annual meeting in autumn and our homepage (http://www.hippel-lindau.de). To keep in touch on a personal level, we chat online every first and third Sunday.

However, our experience is that information on the professional side is not enough – especially in the case of our disease. That’s why a large part of our effort deals with educating the members themselves on the regional level. For that reason we have put a lot of effort into organizing regional spring meetings this year.

Last year we only had one regional meeting for our members in the North and West of Germany. At the end of last year we decided -- together with the members of our medical advisory board Prof. Neumann and Prof. Schmidt -- to hold four regional meetings: (1) North and West, (2) East, (3) Southwest and Switzerland, and (4) Bavaria and Austria.

In the last one and a half years we found that for many of our members, the psychological and social aspects of VHL in daily life are of great importance. So we decided to focus on this topic in our newsletter and in our annual meeting, in addition to the medical aspects of VHL. In order to learn what the main problems were, we organized a broad discussion process at each of our regional meetings about the social and psychological aspects of VHL.

As a first step, we collected the problems our members have in dealing with VHL. Afterwards we asked them to write down the three or four topics they personally considered most disturbing. In that way we found out what the main problems were in each region. At the end of every regional meeting we talked about possible solutions.

After all our four meetings were held we compared the results. Out of all topics raised, the ones most often mentioned are shown in Table 1.

Table 1: Psych-Social Topics of Greatest Concern to the German VHLFA Membership
Fear of screening results	37%
Making healthy choices	32%
Coming to grips: it never stops!	31%
Life and Health insurance	29%
Coping with "health decline"	24%
Finding good physicians	24%

Our annual meeting, will be held this time in Berlin from 26-28 October, 2001. Among the speakers will be a psychologist, giving a speech on the topic "Coming to grips: It never stops!" At the Padua Symposium 2002 we hope to learn more about making healthy choices (diet, vitamins, exercise, not smoking) and we will try to cover the other topics in our next meetings or in our newsletter.

We would like to hear from the other VHL-groups, if they have experienced similar problems and how they are dealing with them. Don’t hesitate to contact us.

Gerhard Alsmeier, Chair of the German VHL-Alliance, g.alsmeier@hippel-lindau.de or vhl-de@vhl.orgAs printed in the VHL Family Forum  9:3, September 2001. 

For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.