The truth about Werner Syndrome


Written on 2013-02-23 in the Netherlands    

After the death of my girlfriend, I decided to continue my search for fellow sufferers of the disease. This doesn't mean that I had forgotten about her, on the contrary, (I will never be able to forget her) but she asked me to keep searching for another fellow sufferers and I actually think this is also important for myself.

I had consulted some people in the Netherlands (who are familiar with rare diseases) how to deal with this.
They advised me to go back to the source, which means to write to the location where investigations into the Werner Syndrome were done and where records have been kept. Of course, there couldn't just be given a name of a patient regarding the right to privacy (which I was aware off), but I had to have a lead or starting point. On the website of the University of Washington (USA) was a link to a contact that I tried, she was so kind to refer me to another contact person of the University of Chiba (Japan).
This last person told me that there was a support group of Werner Syndrome patients in Japan and there is a website (my curiosity had been aroused). Immediately I tried to come in contact with Mr. S. Tanaka, he is the general secretary of the WS support group.
He is very helpful and helps me a lot, we still keep in touch, this is something I'm very happy about.

Mr. Tanaka told me about Mr. Hiroyuki Endo, a 64-year-old WS patient and also representative of the WS support group in Japan.
On February 19th 2012 there was a meeting in Tokyo for WS patients and guests, Mr. Hiroyuki Endo was also present. On this day I've been introduced by Mr. Tanaka to the attendees on the basis of responded to my call and photographs. Soon after the meeting the health of Mr. Hiroyuki Endo sadly deteriorated and on March 17th he was hospitalized. After having severe seizures Mr. Hiroyuki Endo deceased on April 9th 2012.

The book "The truth of the Werner syndrome" written by Mr. Hiroyuki Endo.

If we hold on together by Diana Ross

"Whether you're young, old, rich, poor, famous or unknown, everyone can pass from one moment to the other, to be robbed from his youth by an unexpected illness or a serious accident making this valuable life collapse by fate". This is one of the first sentence which Mr. Hiroyuki Endo has written in his book. He describes his battle against a debilitating disease that eventually he would loose from.

Mr. Tanaka told me about Mr. Endo's autobiographical book called "The truth of the Werner syndrome" that he had written in 2008, which is published on the Japanese WS website.
Unfortunately I've never had the chance to meet him and I kept thinking of the book that Mr. Hiroyuki Endo had written.
I deeply regret it that I couldn't read it because it was written in Japanese. Months before I had taken it from the internet and I felt that I had to do something, but I didn't know what. So I tried to make a translation of it, but making a translation from Japanese to English or Dutch is not very easy. Japanese is one of the most difficult languages for Westerners. Then I went to a translator Dutch-Japanese continued with the question whether it could be translated, it would be a lot of work that's what I knew in advance (in total about 4 months of analysis and translation). Previously I have written that each persons story is unique so also this story, especially because it's a story of a fellow sufferer of mine I feel a certain connectedness with his story.

In consultation with the Werner syndrome patients group and different contacts in Japan, I agreed that I can book place the book on the internet. I can only praise Mr. Hiroyuki Endo, the perseverance and the combativity with which he went into battle against the disease was unprecedented. I think that his way of living has made him to reach a high age for a WS patient.

Important note about the book!

In the 40 years that Mr. Endo lived with Werner Syndrome he has made many notes about his illness and medical treatments. Many of these processes are not applicable in the present time in which we live in and because medical science is still evolving. In the most recent research it is undeniable that there are some inaccuracies that are mentioned in his book.
It is very important to know this before reading the book.

This book is written in Dutch language and there is no English version.