The NY Chapter of the VHLFA had its 4th annual meeting on Sunday September 21, 1997. Ten people attended including Dr. Karol Krzystolik all the way from Poland. He is the type of doctor every patient would love to have, concerned, knowledgable and very compassionate. He lost a daughter to spina bifida, and is very aware of the questions VHL patients and families must address.

He and another researcher are working on finding VHL families in Poland. His co-worker does the actual DNA testing and he does the clinical work including some counseling and referral to necessary specialist. As you can imagine he is overwhelmed and other research interests have been postponed. Dr. Krzystolik would like his research to concentrate on what can defend or keep the unaltered VHL gene healthy.

Dr. Krzystolik had very interesting thoughts on alternative medicine. He feels that vitamins like vitamins A & E and microelements or minerals like selenium could play a roll in cancer treatment. There has, of course, to be more research. He thinks we should not treat ourselves as sick persons, VHL is not a disease but a predisposition because not every person with the mutation will get every manifestation of the disease and some may not get any. Dr. Krzystolik feels that big stress causes decreased immune function--so use stress management techniques such as relaxation or humor. Avoid x-rays as much as possible--having VHL requires that we all get CT scans and women must get mammography for breast cancer screening but not every dental visit, for example, requires x-rays.

Lastly, Dr. Krzystolik said that he steers his VHL patients to one or two doctors in a particular specialty, this way you make an expert. There are not that many of us and a doctor seeing no or perhaps just one or two patients with VHL would never get the experience he needs.

Dr. Krzystolik had some very interesting questions for us too. He is faced with a very difficult situation. A husband, due to past experiences, has become distrustful of doctors. He has VHL and also has several children. His wife does not know that the children have a 50% chance of also having VHL. Dr. Krzystolik asked how he should handle this? He must honor the patient's right to confidentiality but is concerned that the wife does not know about the potential medical concerns of her children. He also asked our opinions on other questions like: At what age should a child be told about their diagnosis?

Should all the children in a family, those found negative as well as those found positive for the VHL mutation, be screened just so everyone is treated equally? Should parents be told which children have tested positive for the VHL mutation? Will knowing make a parent treat their children differently?

This was a very interesting meeting. It reminded us of just how small the world is. VHL families on the other side of the world face the same basic problems we do.

As published in the VHL Family Forum 5:4, December 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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