A bunch of FM patients and I founded the first fibromyalgia patients’ support organization in Japan in October 2002. It has been my long-cherished desire to communicate with fellow FM patients overseas, and it gives me great pleasure to briefly introduce to you our organization.
One of our organization’s aims is to inform the Japanese public about the disease. Because of lack of knowledge—not just in the general public, but also in the medical community—thousands of people spend years wondering what they are really suffering from. Many are misdiagnosed, told their symptoms are menopausal, due to some other disease—or are imaginary. The more time they spend searching for a firm diagnosis and proper treatments, the more difficult their condition becomes and the longer it takes to start recovery.
Several symptoms of FM had been observed in me for 37 years before I was diagnosed. When a doctor diagnosed me seven years ago at last, strangely I felt relieved because, for the first time, I knew the pains were not imaginary. They were from a real disease.
My years of difficult experience made me decide to establish a support organization in the hope that I could help even one patient like myself. So much of our precious life is spent in vain! I believe such waste should be minimized—and at last I had found my purpose. So my determination was firm, though I was, and am, still very frail.
We, the Japan Fibromyalgia Support Association, want suffering people to know what they’re dealing with by offering medical information—and we want to save them a struggle in the maze of pain and misdiagnosis. The years I had wasted gave me courage and a sense of mission in driving our organization’s activities, such as public and medical education about the disease, and empowering the patients.
Despite the fact that we had never done anything like this before—managing an organization and navigating the medical world and political world—we have made numerous fearless attempts for nearly five years. I have to admit that, personally, it has been a very exciting and interesting challenge to live with fibromyalgia, to study it, to meet people, even to meet politicians!
Our small support organization received its nonprofit status in October 2004. All this effort eventually enhanced my health, a benefit I had not anticipated! I learned what we need to survive is a positive attitude and hope—despite the pain.
JFSA membership totals nearly 900 and all our activities are supported by a small number of volunteers. At this stage, we feel we need to learn how to build and how to run a bigger organization. An epidemiological research survey done in 2005 shows that 1.66 percent of the Japanese population has FM—about 2 million people. We have to make steady steps to grow to support such a huge number of patients. Finding enough good volunteers and financial supporters to sustain the JFSA is always very difficult, because we are fully occupied by our daily work. One of our top priorities is to ensure that the members’ private information is highly secure, so we cannot turn over our responsibilities to anyone else.
It’s a small organization—but it’s a busy one! We have only three directors. They act as our editors, accountants, artists, printers, lobbyists, interviewers, IT helpers, etc. It sounds impossible to manage, doesn’t it?
One of the most obvious characteristics of FM in Japan is that many patients are in a severer state; perhaps this is due to the excessively long road to diagnosis. In 2003, a research group was formed at the request of the National Labor and Health Ministry. Interestingly, Japanese health insurance is compulsory but FM is not covered by it yet. Awareness of the disease is very low in health insurance administrators. This means heavier medical and financial burdens on FM patients. It is not easy to persuade the administrators who are controlling the money we pay.
The FM Research Group includes rheumatology professionals, surgeons, and psychiatrists, and our organization has been closely working with the group. Symposia are held every year, and the last one was February 28, 2007. The professionals involved in FM gathered and reported on their recent studies. It’s exciting to see the progress being made, but we still look forward to treatments that will cure the disorder—which, we imagine, will likely vary from patient to patient.
Our organization and the research group will continue to make every effort to help the patients. At this point the movement has grown so strong that it can no longer be ignored.