The first meeting of the nascent VHL support organization in South Africa took place at the Sappi headquarters on Mrch 15. Fifty-five people came to learn about VHL, and to talk about how to organize the support group. Six of those present signed up to help organize the group.

The facilities for the meeting were provided by Sappi, and lunch was donated by SAIDA, the South African Inherited Disease Association.

Dr. Lizette van Rensburg, a geneticist from the University of Pretoria, explained the genetics of VHL, and how to go about testing for VHL. She has been working with VHL families for some ten years, and has identified two large progenies and several smaller ones. Nearly all the people studied so far are of European descent. There are still significant health disparities in South Africa, and most native Africans look first to their traditional healers for help. She is hoping that with the improved health care under the democratic government, that we will see the disparities soften over time.

Dr. Engele Honey, a pediatrician, also from the University of Pretoria, explained the screening protocol. She stressed the need for proactive screening, to make sure that if a problem occurs, we will find it early and treat it successfully.

Joyce Graff explained the history of the VHL Family Alliance international, and invited the group to join the international network of VHL support organizations worldwide. We need to learn from everyone, to get the broadest possible understanding of VHL. For example, these families whose ancestors came to South Africa from England, Holland and Germany in the 17th, 18th, and 19th centuries, may well have relatives in those European countries. It would be interesting to see whether the experience of their family members in Europe is the same or different from the experience of the branches of these same families in South Africa? She also explained how we as patients can "shift the odds" of getting tumors by taking good care of that second copy of the VHL gene.

Altheada Johnson shared her own family history with VHL, and her own philosophy of living with VHL, and encouraged others in the room to share their own stories and learn from one another. Fred Johnson answered questions from Markus and others about his experiences as a caregiver for Altheada for the past twenty years. We went around the room, with some people speaking in English and others in Afrikaans, the local language based on Dutch. There are 11 official languages in South Africa -- English, Afrikaans, Zulu, and eight other African languages.

We had a wonderful and exciting day together. It was hard to say goodbye. We are looking forward to working with this enthusiastic group over the internet as they coalesce into a formal organization. We are also hopeful that Dr. van Rensburg will attend the Medical Symposium in Denmark in September, to present her findings to date and begin to make connections with the VHL research projects in Europe.

From Markus:

I would like to take this opportunity to thank you for your contributions and efforts in helping to make the SA conference a huge success.

I personally feel that every small comment, every explanation, every question, and every presentation happened for a reason and contributed to the end result.

Just a few comments I received from the people that attended the meeting:

"... Amazed at how positive people with VHL are..."

"Good to see old people with VHL around."

"... the family members of the people with VHL have more to cope with than the VHL person himself."

The moment that touched me the most was when everyone voted like one man to establish a support group in South Africa. The moment was so great that I struggled to swallow the lump in my throat. That was the best recognition that I could ever have asked for.

I hope you enjoyed your short visit to South Africa and I hope to see you for another meeting, but this time around you must make it a longer holiday so that you can explore our beautiful country.

Talk to you soon.

Altheada: Best of luck with the operation.

Fred: Thanks to you for the valuable lesson to "Take time for yourself."

Regards,

Markus Jansen van Vuuren