First Meeting in Japan

by Hanako Suzuki, Tokyo, Japan

Ms.Hikosaka and Ms. Akagi, Kochi Medical School staff.

Our first VHL meeting was held in Osaka, February 15, 2003. It was chaired by Dr. Taro Shuin of Kochi Medical School, who heads VHL research in Japan.

My husband is actually the VHL patient, but unfortunately he was on a business trip. Happily, he is very well now. Most of time he is able to forget about his disease. Anyway I went to Osaka instead of him. I arrived at Osaka at 11:30. It took 2 hours and a half by Shinkansen (the bullet train). Osaka is the second largest city in Japan and famous as the city of laughter. Most of the famous Japanese comedians are from Osaka.

Fourteen patients and family members gathered in a conference room of the Pharmaceutical Division of Kirin beer.

As you know, it was our first meeting, so first of all we asked everyone about their experiences and their wishes for this group. Then we decided to propose our actions for the first fiscal year.

Dr. Kanno made a presentation about symptoms and treatments of CNS hemangioblastomas. Dr. Ito talked about his experience with a group which he supports for another rare disease called ADSL. Dr. Shuin described his VHL research in Japan. Most Japanese VHL patients have CNS hemangioblastomas. The peak ages are age 16-20 and age 26-30. It seems it’s younger than in western countries. However we seldom have pheochromocytomas. I don’t know if this kind of data is available for other Asian countries and for Japanese who emigrate to another country.

After the meeting we had a small party. I talked to an interesting guy from Kyoto who has two other people with VHL in the family. They own a family business. When they were diagnosed with VHL, they all had tumors and their surgeon recommended that three of them have surgery immediately. They couldn’t close their store, so they argued to decide who would have surgery first. In 50 days he is going to have brain surgery again. He brought his MRI films to the meeting and was given advice from doctors who are familiar with VHL. It seems everyone really enjoyed the conversation, foods and drinks.

We are delighted with the many patients and families with VHL who now belong to our new group!

We are looking forward to the International Medical Symposium on VHL scheduled in Japan May 20-22, 2004.

For VHLFA Japan see http://www1.odn.ne.jp/vhl_japan/

For Kirin Pharmaceuticals, see http://www.kirin.co.jp/english/r_d/pharma/020630.html