I suffered poor health and wanted to know why. At first I attributed my physical weakness to my grandmother, but my father asserted that I was suffering from Kanemi Yusho Disease. When I was in kindergarten, I was given Kanemi Rice oil, for it was said to be good for health. Since then I began to feel dizzy. The problem came to be widely known, and our family applied for a certificate, but was not qualified for some reason.

So I started investigation by myself .
I found out:

1. Many of the people who took Kanemi Rice oil were in Western part of Japan
2. The oil contained poisonous PCBs
3. Among more than 10,000 people who applied for Yusho victim’s certificate, only about 10 percent of them were qualified.
4. I had similar symptoms as other Yusho victims, described in their articles and research papers: in addition to skin symptoms, dysfunction of internal organs, sense of fatigue, fever, sluggishness, stiff shoulders, joint ache, headache, autonomic nervous symptoms, low blood pressure, polycythemia.
5. Small children showed a remarkable degree of abnormal autonomic function.
6. Despite all these anomalies, doctors failed to identify a specific cause for illness.
7. Their children or even grandchildren suffered from the same symptom in some cases.

My health could be attributed to something other than my inborn constitution.
I started thinking about getting in touch with Yusho victims' association...

I began searching for information about Kanemi Yusho in the Internet, starting from Kyushu University Hospital, which offered outpatient treatment for Yusho victims. I learned we have annual medical examinations for the disease. I made an inquiry at Tokyo Metropolitan Government in search of more information about checkups in the Kanto area, still waiting for their specific answer. I'd like to know whether my physical symptoms could be ascribed to Kanemi Yusho disease and if so, I was also eager to know how to cope with them.
I had a hard time searching the web for contact numbers of Yusho victims' associations. Then I called Nagasaki Shinbun, which had carried lots of articles on the issue, and was able to talk with the newspaper reporter in charge, who gave me the number for a victims' association in Tokyo. I realized my symptoms were very similar to those of Yusho victims, so I called the association and left the message. Then they got back to me and promised to send me some more detailed information.

They assured that my symptoms were typical of Yusho victims: the reason why I often felt so tired or feverish might not have been because of my laziness or weak mindedness, but because of the disease! I felt at ease knowing the probable cause for my fever in my 20s, which lasted for 2 years and a half. During that time, I felt like lying down to rest, but I often strained myself and then fell sick later. I also identified some other Yusho-like symptoms: I sometimes got sore all over. My neck bones are short on numbers. I had to get my baby teeth pulled out so that they were successfully replaced by adult ones. I still lack in some of them including my wisdom teeth. And my joints hurt as if I suffered from rheumatism.

Though I was a curious child, who loved to try different things, I often had to give up in the middle of things just because of fever. 'Why am I always like this?,' I felt so frustrated. 'Am I still short in mental strength?'
But then I found an answer. It was not my mental weakness, but physical disorder that kept hampering my activities.

Even though I figured out what has caused my disorder, I have yet to remove it. If I hadn't taken Kanemi Rice Oil as a child, I wouldn't be suffering so much now. I thought I was just born to be more vulnerable than other children, but I was wrong. But I have no intention of blaming my parents at all, for they gave me the oil for the sake of my health, not knowing it was accidentally contaminated. Quite the contrary, I feel sorry for them, for they had to blame themselves for their deed.

It was my first day of the annual Yusho checkup. For those who live in the Kanto area, this medical checkup is held at Kitasato University Hospital every year.

According to the papers, Kanemi Co. reimburses transportation fare plus 500 yen for 'lunch' (I wonder how many years this remains the same...) for those who are successfully certified as Yusho patients at the checkup. However, if not, you're required to get in touch with Kanemi Co. in person. When I talked to the person in charge at health-care center, I was told that I should contact the company directly if I wanted to get my traffic expenses reimbursed. In the meantime, he happened to have a chance to contact Kanemi Co. and made an inquiry on my behalf. And we knew that travel cost is not to be paid to as-yet-uncertified victims, and that the company won't make any retrospective payment even if you're certified later on.
I paid 2,500 yen for transportation and had to miss work in order to get a checkup.
The victims living farther away, like in Ibaraki prefecture, are forced to stay overnight near the hospital and to pay hotel expenses themselves. We try to do whatever we do, but I'm afraid neither Kanemi Co. nor the Japanese government has given us a helping hand.

I made a request that they improve the conditions concerning expenses we're supposed to incur. I will tell about the request to victims' associations and newspaper agencies, too.

I got a copy of "the report on Rice oil poisoning" compiled by a health-care center in Shimane prefecture. By "Rice oil"here, I mean the food oil produced by Kanemi Soko Co.
though it's also referred to as "Kanemi Oil" in some cases.
According to the copy, my mother filed a claim in 1968, when the food poisoning came to be widely known, but I was not recognized as a patient then. Since that time, they have made some amendments in standards for certifying victims, so I'm now waiting to be certified again under the new regulations.

Let me explain how I obtained the copy. While I was preparing documents to submit, a person in charge in Tokyo health-care center told me that the documents were still available in Shimane prefecture. I asked them to send me a copy, but they declined my request. Then I turned to Ms. Shukuwa in Goto city, and I knew it would be available under the information disclosure law. First I asked for information under my own name. Soon I got a phone call from Shimane prefectural government and was told that the procedure should be done under the name of my father, namely, the head of our household then. So I called my father and ask him to follow the procedure on my behalf.
My father sent me a copy within a week, though I was told it would take about 3 weeks.
In those documents made out by the doctor who examined me, I found the name of the place where my mother purchased the oil, the period of use, and the oil's lot number.
But I found some flaws in them, too: the name of the patient was not mine, but my father's. It's written in them that we're a family of three (in fact, we were a family of four, i.e., my parents, I and my younger brother).
It was my mother who took me to the hospital, so I presume that the doctor mistakenly wrote the name of my father, the head of our family then, as the patient. I was pretty shocked, for I felt the document wouldn't serve as evidence with such discrepancies.

As I examined the documents, I could vaguely envision what happened several decades ago. The documents were submitted in July, 1968. According to what is written, the date of checkup was July 16th, and I took a 1.8-liter bottle of oil from July to October. As for the year, I could find no descriptions, but it was probably right after my younger brother was born in August, 1967.
Since my little brother was bottle-fed, he might not have been affected by the contaminated oil, though he might have taken in some through oil-cooked food. A 1.8-liter bottle in four months could mean that my mother seldom cooked deep-fried food at home, or she didn't use so much oil simply because we were a small family.
My mother was such a health-conscious person that she most probably used the oil for home cooking as well as added them to milk and gave it to me "in order to improve my health."
In the meantime, my father was diagnosed as chronic nephritis caused by overwork. The doctor said it would be incurable, but my father was miraculously recovered, probably thanks to sodium-restricted diet prepared by my mother. I think his illness might have been caused by the contaminated oil, too, though he says he doesn't think of filing an application for himself.

And as for my symptoms, skin rush, poor hearing, and low blood pressure were cited in the documents. I would develop otitis media every year in my elementary school days, and I wonder if this has something to do with the oil, too.

I strongly encourage those who failed to be qualified as Yusho victims around 1968 to obtain a copy of your documents under the law of information disclosure.
I'll bet they will politely accept your request as they did in Shimane prefecture as well as in Tokyo.

Today I received the result of dioxin level at Yusho examination, showing the density of PCBs and PCQ in the blood. It marked 'level C', which means it showed no statistical differences from healthy people. It was just as I had expected, for I had talked with one of yet-to-be-certified patients last month, who has the worst symptoms in his family―he's suffering from various diseases of internal organs―and even though he's undergone examinations so many times, he's not been officially certified as a Yusho victim.

Under the new legislation, those who have a certified patient in their family are also to be certified as one. I think many of such uncertified victims have not fulfilled the requirements in official examination.

As for me, I think the odds are very low, for I don't have any family member who is a certified Yusho victim, and I haven't met the requirement in checkup, either. I don't expect to get proper treatment unless they're capable of identifying the cause of my illness.

Today I received the result of dioxin level at Yusho examination, showing the density of PCBs and PCQs in the blood. It marked 'level C', which means it showed no statistical differences from healthy people. It was just as I had expected, for I had talked with one of yet-to-be-certified patients last month, who has the worst symptoms in his family―he's suffering from various diseases of internal organs―and even though he's undergone examinations so many times, he's not been officially certified as a Yusho victim.

Under the new legislation, those who have a certified patient in their family are also to be certified as one. I think many of such uncertified victims have not fulfilled the requirements in official examination.

As for me, I think the odds arevery low, for I don't have any family member who is a certified Yusho victim, and I haven't met the requirement in checkup, either. I don't expect to get proper treatment unless they're capable of identifying the cause of my illness.

I received the result of medical examination for Yusho victims under the name of Tokyo Metropolitan Governor. As I had expected, the amount of dioxin in my blood was found to be very low, which was the same as that of ordinary, healthy people. It also added, 'After giving comprehensive consideration on this test results as well as the course of your symptoms, we have concluded that you are not recognized as a Yusho patient. We are glad to inform you, however, that you will be able to lead a better life free of worry, knowing that your level of PCBs, PCQs, PeCDFs are all within normal limits.'

Under the old regulations, even those who are with more severe symptoms than mine were ruled out, though they have a certified victim in their family. It was simply because their blood analysis didn't satisfy the required level. This problem was so controversial that the rules were amended in order to save such patients. But again, this new rule ended up taking hope away from those who don't have such a certified patient in their family...I'm one of them.

The application form didn't have enough space to list my course of symptoms, so I typed them all up, which amounted to several sheets. I thought I did everything I could to explain my condition, nevertheless I was not accepted as a Yusho patient. I'd like to have a reasonable explanation for my weird symptoms, and fever persisting for 2 years and a half. But are they saying that the cause was unknown, at least not by Yusho disease, but probably because of my inborn, weak constitution?
I'm convinced that I'm one of those Yusho victims. I've learned much about the disease myself, getting in touch with other victims and supporters, and now I know that there're so many yet-to-certified victims due to the flaws of regulations. The result was just what I had expected, but even so, it made me upset.

Even when you are found to have so many abnormal blood levels of substances, and even if you still have baby teeth after arriving in adulthood, you won't be certified under current regulations, only if your dioxin level fails to go over the limit. I was told that there's a patient who were certified in his third checkup at health-care center in his area. I wonder if there was any increase in the level of dioxin in his blood...

Yuri, a friend of mine, made an inquiry to Mr Masutaka Furue, the chief of Kanemi Yusho group to make an inquiry about my condition over the phone.

Most of the Yusho victims and their supporters regard my atypical leukemia which I have been treated for as one of the Yusho symptoms. So they try to find the way for me to be officially acknowledged.

In order to qualify for Yusho victims, it's imperative to attend the annual checkup, and for those who live in the Kanto area, it's held at Kitasato University Hospital in Sagamihara, Kanagawa prefecture. Frankly, all the circumstances are far from patient-friendly: The hospital is located about a 30-minute bus ride from the nearest station, and we're required to check in early in the morning.
I live in Tokyo, in the area relatively close to the borders with neighboring Kanagawa prefecture, but even so, I would have to catch the 6 o'clock train in the morning to arrive in time.
Those who live further away might need to stay overnight. Some might need to skip work without any compensation and with a lot of self-pay. And in spite of all these troubles, the possibility to be newly certified as well as its compensation benefits seems to be very low: Kanemi Soko Co. provides them with 500 yen "for lunch", and reimburses transport expenses. That's all.
Under these circumstances, we become very hesitant about taking the checkup, which is subsidized by the Ministry of Health and Welfare. What is the benefit for us?

I asked my doctor whether it would be possible for me to go all the way to Kitasato University Hospital for checkup.
Though a bit skeptical, he said to me,
'If you can cancel at any time, why don't you make an appointment? I'll get you the document if needed.'
I was pleased with him sincere attitude toward patients.

The checkup items are basic ones and available at any hospital, so I'd be glad if they were more patient-friendly, for we're not so strong as healthy people, needless to say.

Yuri made a phone call to Ministry of Health, Labor and Welfare.She talked with a person in charge at the Department of Food Safety of MHLW.

Yuri	The person in charge

to be continued