The first meeting of the nascent VHL support organization in South Africa took place at the Sappi headquarters on March 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.

I have been privileged to visit 26 countries where I have visited with people with VHL.* It is fascinating to see VHL through the eyes of another culture, another health care system. And as always, the families are wonderful people who deal with difficult situations with great grace, and who understand what is important in life.

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, we will see the disparities soften over time.

Altheada Johnson

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.
I 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. We might learn that there is something in the environment in South Africa that changes the experience of VHL -- something that might lead to a treatment.

I 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.

Annerita

Annerita has been corresponding with Joyce for nearly ten years.

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.

Comments from the attendees:

“... 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 as the organizer 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.”

Altheada: Best of luck with the operation.

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

* Note: all but two of Joyce’s international trips were privately funded, with no cost to VHLFA.

As printed in the VHL Family Forum 16:2, May 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.