VHL in China

Dr. Shu and Joyce Graff in Guangzhou

More photos from Guangzhou

After the Kochi meeting, I went on a vacation trip into China, to visit my friend Dr. Si Yun Shu, Director of the Institute of Neuroscience at the First Military Medical University of China, in Guangzhou, and Chairman of the Department of Neurobiology. I had met her years ago when she was doing a post-doctoral fellowship with my father, Dr. Harry Wilcox, who was a professor of Anatomy at the University of Tennessee.

One afternoon she hosted a conference on VHL for faculty and medical students of the university, and physicians from the hospital. Dr. Kai-Tai Yao, a professor in the cancer center and a member of the Chinese Academy of Sciences, gave an overview of VHL in Chinese.

Then I gave my talk in English about VHL, the VHL Family Alliance, and the Kochi meeting. I talked about the various aspects of VHL and how doctors have been able to increase the rate of diagnosis in other parts of the world. If there is one case of VHL in 32,000 people, then there must be 30,000 people with VHL in China. The keys in other countries have been to raise consciousness among physicians of the various aspects of VHL, to suggest when to screen and do differential diagnosis for VHL, and then in addition to make information available to patients and physicians about how to manage one’s health.

They were very engaged and asked very good questions. One doctor asked if there were a VHL Family Alliance chapter in China. I said not yet, but we are of course glad to work with a Chinese affiliate group. For example, a Chinese discussion group on the internet might be the first place to start. With such a large country, high internet connectivity, and such a low rate of diagnosis at the moment, it will be hard to link people together across such distances.

My vacation trip took me on to Beijing, where I met with Dr. Kan Gong, a Urologist, from the First Hospital of Peking University. I had met Dr. Gong at the Kochi meeting.

I gave the presentation I had prepared for Guangzhou and we talked about VHL in China. We talked about strategies that have been used in other countries to raise the rate of diagnosis over the past ten years. This team has currently asked doctors throughout China to refer to them all cases diagnosed with VHL. I said that in other countries it has been helpful to broaden the request -- ask to see all patients with RCC tumors who are under the age of 40, or who have tumors on both kidneys. In this way they are likely to find not only VHL but also other hereditary cases of kidney cancer.

Dr. Gong was very impressed with the family interaction in Japan, and hopes to help create a similar family alliance in China. I said that we would be happy to share information and interact with the group, and explained how we work with other international affiliate groups. It takes a certain amount of energy from the families as well, so we will all look for a few good family members who can help to bridge the language gap and link China with the resources available in English and other languages.

In the two months since these meetings we have come into contact with two new VHL families in China, and Dr. Shu has been helpful in finding a capable neurosurgeon for one patient. We are looking forward to strengthening these new ties with Asia.