The Danish Association for von Hippel-Lindau

by Richard Harbud, Denmark

Like the VHL Family Alliance in the USA, the Danish Association was started in 1993, and for pretty much the same reasons. Originally the association comprised solely of the family members of our chair, Vibeke Harbud, herself a VHL patient, and one doctor. We too felt there was a lack of coordinated information on VHL, and that if we wanted more information on the subject then we had better find it ourselves. Today we have a membership of eight families and contact with some thirty doctors.

It has been our experience that the need for clear information, for patients and doctors, is of paramount importance. General practitioners and hospital doctors have not always been aware of the necessity of regular and systematic check-ups, and it follows that patients have also been unaware of the benefits. Fortunately, today we have the cooperation of hospitals, who are kind enough to inform VHL patients of our Association, and who in turn can inform their doctors.

However, establishing a contact with VHL patients is not easy. It is estimated that there are perhaps 30 to 50 families in Denmark with VHL. Few of these will have been correctly diagnosed, and fewer still are known to our Association. Despite the fact that Denmark is a rather small country, with some five million people, our Association could still be regarded as regional. Currently most members live in and around the city of Aarhus, as it was there the association was started, and there many VHL patients have their check-ups. Fortunately, Dr. Eigil Kjeldsen of Odense University Hospital (eikjeld@biobase.dk) who specializes in human genetics, hopes to instigate a nation-wide study of VHL patients. Thus a more complete picture of the extent of VHL in Denmark could be available within the next few years. Hopefully Dr. Kjeldsen will be attending the VHL conference in Hawaii in 1996.

As I stated before, our Association is very small. My wife and I take care of the few administrative tasks there are; Vibeke (pronounced vee-b-ka, in case you are curious) keeps in touch with doctors and I take care of letter writing, forwarding of brochures and so on. Generally speaking very little happens. Occasionally, however, the phone rings and a complete stranger introduces themselves as a VHL patient. More often than not we discover that the person on the other end of the line has just been told that they have VHL. Just as frequently we learn that they could have been helped at an earlier stage, had their families not tried to keep the disease a secret from their relatives and general practitioners. It is no easy thing, talking to a complete stranger on the phone about a potentially dangerous disease, and despite the fact that we immediately refer them back to their own doctor and offer to supply them with copies of all the material we have on VHL, we find that we end up administering first-aid. The chain of events is almost always the same: the patient, following treatment for previously undiagnosed symptoms, is informed by the hospital that they have VHL, at which point in time the patient is ill-equipped to deal with the problem and therefore understands little of what is being said to them. The patient's family concedes that there is "something in the family;" the doctor does his or her best to explain things. The patient, by this time thoroughly confused, finds the brochure given to them by the hospital, phones us, and the battle against ignorance commences.

It has not been easy, starting and running an active association for VHL patients in Denmark, and it has been inspiring to establish contact with the VHL Family Alliance. Both my wife and I were astounded by the speed and quality of response following our first contact, and to describe the VHL Family Alliance as "dynamic" might be bordering on understatement. We know for sure that since making contact we have helped to increase the range of inter-professional resources available to doctors in Denmark, which in turn will give long term benefits to patients. We would like to take the opportunity to thank the VHL Family Alliance and wish all those involved all the best for the future.

Foreningen af Von Hippel-Lindau Patienter, Vibeke Harbud, Fiskervejen 10, 4000 Roskilde, Denmark. Tlf: +45 46 76 70 33

As published in the VHL Family Forum, March 1996

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