Struggling to meet individual needs
Japan has around 300 Thalidomide's. They are organised in Ishizue-foundation. One of its more prominent members is Tsugumichi Sato. He reports about the Japanese scene.
Japan was heavily stricken during the disastrous years in the 60s. The drug was sold in large quantities. And also after the with-drawn in 1962, thalidomide was still sold in pharmacies in more remote parts of the country. The last known case was born in the island of Okinawa in 1965.
At present there are approximately 300 Thalidomide's living in Japan . The birth rate was considerably higher as it is estimated that roughly 80 percent of the babies affected by the drug died with in their first year (compared with roughly 40% in other countries). The reason for that significant difference is hard to speculate about. But the fact is that the majority of Japanese Thalidomide's has, what is characterised as "milder" forms of disfigurements of the upper extremities.
The Japanese thalidomide society is organised in the Japanese Foundation for Thalidomide's "Ishizue". It is a national centre for all Japanese Thalidomide's, established by the compensation distributed from the Japanese government and the medical company, Dai Nippon (who was licensed by Chemie-Grünenthal to re-seller of thalidomide in Japan), when the Thalidomide united lawsuit was settled in 1974. Ishizue is an organisation that undertakes welfare work including health care, consultation, planning social gatherings, providing useful information and controlling the pension.
Both advantages and limitations
There are both advantages and limitations of a national thalidomide organisation. The main advantage is the ability to request the Government for measures we require to assure our standard of living. However, because the needs of each individual vary considerably, it is difficult to organise all the members into one big national group.
Due to financial reasons Japanese Thalidomide's can not organise meetings and activities with the same frequency as other Thalidomide organisations. Therefore we in Japan believe that the international Thalidomide society, UNITH, can play an important role for Japanese Thalidomide's. It can serve as an information exchange, thus improving the situation for Thalidomide's in Japan . And an international organisation can also encourage activities of domestic organisations.
The Japanese party got standing ovations for our singing performance at the 2nd international World Congress in Sweden , with a genuine Japanese lullaby. Clearing our throats is from left to right: Kazuhiro Yamamoto, Tsugumichi Sato, Naomi Mamiya, Hiroko Mizumura, Kaoru Noguchi, Keiko Matsumura, Tomoko Nakahara, Miwako Yonehara and Kiyoshi Mamiya.
Great fun in UNITH
UNITH can bring great fun too. The last UNITH Congress in 1995 in Bastad , Sweden , along with the congress 1992 in Nijmegen , Holland , was a very valuable experience for me and the whole Japanese party. It was interesting to get information in various topics, such as the high standard of social systems for the disabled in other countries.
The Swedish congress turned out a big success. I enjoyed a pleasant "cool" summer in Sweden rather than staying in Japan where it is usually is hot, above + 30°C and humid in August. At least, in Sweden , it was only hot. Among Thalidomide society members in Japan , seven of us, one partner and a friend participated in the UNITH 2nd World Congress.
Open-hearted Swedish friends
When we in Ishizue received an invitation from Sweden to participate in the Swedish Thalidomide society's annual summer camp we didn't hesitate for a second. This time 11 Japanese Thalidomide's made the trip to Sweden . I was very happy, enjoying a pleasant summer in Sweden once again together with open-hearted Swedish friends. The climate in the south of Sweden is similar to it in Hokkaido , the northern major island of Japan , where I was born. The hot and humid summer around Tokyo , where I am living, tires me. And I felt very comfortable in Scandinavian large land.
Perhaps you want to know a little bit more about me, Tsugumichi Sato, besides that I'm the former representative of Japanese Thalidomide's in Ishizue.
Born in Hokkaido
Well then I was born in the north on the large island of Hokkaido . My parents and grandfather, 99 years old, live together in Sapporo , the biggest city in Hokkaido . Do you remember the Olympic Games in Sapporo ? I do. I like most of sports; skiing, playing soccer, tennis and especially table-tennis, though I can not easily find time for doing them unfortunately. I'm also interested in playing golf, but it's very expensive in Japan . I have another hobby of playing Japanese chess called "Showggi".
Start with a coffee break.
I commute between the suburbs of Kawasaki city and Tokyo , packed like sardines in a crowded train. Because it takes me one hour and half to come to the University where I'm working, it is necessary that I start the work with a coffee break.
My position is a research fellow in a medical school in Tokyo . I have majored in pharmacy, especially studying drug safety in order that drug-induced sufferings, like the thalidomide tragedy, will not be repeated. I have a deep concern for the returning of the thalidomide tragedy in Brazil . Besides, I know the news that Food and Drug Administration (FDA) in the United States has approve the use of thalidomide once again.
Thalidomide is being reviewed world-wide!
Warn the general public
Under these circumstances, it is very important that the first generation Thalidomide's makes it their responsibility to warn the general public on the risks of thalidomide usage. Off course it is also of great concern to provide help to the new second generation of thalidomide-affected children, and their families.
Ishizue; the national centre for Japanese Thalidomide's, is constructing an Internet web-site in order to inform the public on the history of the thalidomide tragedy, the risk of this drug, and how misuse must be avoided. I hope that members of other international thalidomide organisations; like in Sweden , Britain , etc., and Ishizue could co-operate in this matter.
Naturally must UNITH play a significant role in this important work? Considering the future of UNITH, I think it would be very significant, and encouraging for us, if there would be a system where we could consistently exchange information between individuals as well as organisations within the Thalidomide society as a whole.
We are all looking forward to the next UNITH congress. Until then , best of wishes to everybody !
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