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How I Found My Way To Akita

- Recovery from Sternocostoclavicular Hyperostosis -

I am a 38-year-old Japanese female, presently residing in Tennessee, USA. My problem started in May of 2000 when I was visiting Japan to attend my grandmother's funeral anniversary. Soon after I arrived in Japan, I felt some pain around my chest and upper right arm. The pain became worse as days went by, so I decided to see an orthopedic specialist. The doctor did not find anything wrong and said this could be post-herpes neuralgia (arthritis?). He then referred me to a dermatologist. I had never had herpes, but the dermatologist's diagnosis was the same as the first doctor. He immediately started treatment on me - shots and oral medication. But the pain only became worse. I visited another orthopedic specialist and dermatologist for more tests and second opinions. They determined the pain was not herpes related, but still could not tell me what was the cause.

I returned to America, feeling helpless and worried. By that time, I could not even lift chopsticks with my right hand. My primary care physician suggested an MRI. After the examination, I was told the pain was caused by a hernia of the cervical vertebrae (ruptured disc in the neck). Surgery was recommended but I was hesitant about that idea. I would rather try some exercise therapy first. For the following three months, I commuted to the therapy clinic three times a week.

While I was receiving series of exercise therapy, small pustules began to appear on the soles of my feet and they quickly multiplied in number. Just by looking at them, a dermatologist diagnosed this as common athletes foot, and prescribed pills and cream for topical application. Now, in addition to my therapist, I had to see the dermatologist on a regular basis. By that time, the chest pain was getting rather mild (or maybe my body was getting used to the pain), but my athletes foot was far from improving. I went to a new dermatologist. There, the doctor sent my skin sample to a laboratory and my problem was given a new name - "psoriasis vulgaris", which I had never heard of.

By the time I was told the new diagnosis, I had become quite doubtful about all doctors, both Japanese and American. But I tried to convince myself that the new treatment should work since the diagnosis was based on the biopsy result. Receiving UV light treatment at the doctor's office, taking steroid pills and applying vitamin A and D cream at home . . . I followed the doctor's instructions religiously, but the blisters became worse. They even began to spread to the palms of my hands.

In the meantime, I spent many hours in front of a computer screen to learn more about psoriasis. While visiting various Japanese web sites, one question began to form in my mind: "Why do those pustules remain only on my soles and palms? Is this really psoriasis?" One day in April, 2001, almost one year after the chest pain first started, I happened to use the word "palm" ("tenohira" in Japanese, but I used the Chinese character "sho") to search for more sites, which finally led me to the web site created by "Akitakomachi".

I soon e-mailed Ms. Akitakomachi, and she e-mailed me right back to tell me about similar illness and her amazing experience with Dr. Maebashi in Akita, Japan. It did not take me long before I decided to visit Dr. Maebashi in the National Akita Hospital . Of course I asked myself many times if I really needed to go all the way to Japan. Surely I should be able to find a doctor here in America. But when I thought of the fact that my blisters were not getting any better, I knew I must go to Akita.

In June, 2001 I visited Dr. Maebashi, and he promptly diagnosed my problem as "sternocostoclavicular Hyperostosis". He explained to me that the chest pain came from a bone disorder, which was also the cause of the pustules on my soles and palms. While with common psoriasis, blisters appear on any soft parts of your body, with this illness, blisters appear only on the soles and palms. I was so glad that now I knew what was wrong and that I knew there was a cure. Even after I made all my travel plans to Akita, both my husband and my parents (they live in Kumamoto, at the far end of Japan from Akita) were not so sure about my trip. But I had spent enough days wondering if I had received a correct diagnosis, or if I would ever get well with the current treatment. I was so miserable and desperate. I would visit Dr. Maebashi wherever he was, even in the jungles of Africa.

I later learned that a noted dermatologist in America once reported that this case was found only in Japan and some European countries, but extremely rare in America. Therefore, this illness is not widely acknowledged in the United States. Although more and more people suffer from similar symptoms to mine, they are all treated as common psoriasis patients and, unfortunately, are not making much progress.

To many of us, America is the world's most advanced country in the field of medicine. But doctors here could not help me. It is a wonderful surprise that we have Dr. Maebashi in Japan, and that he has cured many patients including Ms. Akitakomachi. After taking the medicine for four months, both of my symptoms, the chest pain and the itchy blisters, are almost all gone. I was told that he has been studying this illness for a long time without any financial aid from the government or private organizations. As a Japanese, I am very proud of him. Once again, my problem was "sternocostoclavicular hyperostosis", which I could not even find in the English medical dictionary I purchased.