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Visit at St. Marianna University School of Medicine.

St. Marianna University School of Medicine is located on top of a hill in Kawasaki, Japan. It is one of three centres specialising in treating Behcet's Disease in the capital region. BD patients are treated here in both in-patient and out-patient facilities by some of the most prominent doctors in the field.

Two of these specialists are Dr. Takehide Matsuda and Dr. Hiroshi Oka. They both work from the same office in the Internal Medicine ward, and are specialised in such fields as allergy and rheumatology.
The hospital treats 150-200 Behcet's patients, roughly 10% of the total in Japan. About 40-50 of them are admitted each year.

Dr. Oka came to greet us at the entrance, and lead us straight to the office, where Dr. Matsuda was waiting. We discussed the situation of a few BOW patients currently receiving advice from the two doctors, then went on into Behcet's in general, before being taken on a grand tour of the facilities.

Among the issues discussed were misconceptions about Behcet's. The doctors wish to let us all know, that in contrast to other autoimmune diseases, Behcet's does not normally come accompanied with other diseases! So if you are diagnosed with BD and Crohn's or Lupus or Sjorgren's or MS or anything else, you are likely suffering from one but not the other. That is to say it is safe to assume that all your symptoms come from the same disease, whichever that one may be.
Complaints that often appear on the ONElist, such as Fibromyalgia and Chronic Fatigue are misdiagnoses of Behcet's symptoms. This is why many doctors insist on calling this disorder Behcet's syndrome- because it is a mixture of many different symptoms presenting like other diseases, and it is exceedingly difficult to tell the difference. Behcet's does seem to present even more symptoms in even more areas of the body than other autoimmune diseases, but it is very rare for it to overlap with others!

The issue of heredity was also mentioned. According to Dr. Matsuda and Dr. Oka, although there is probably an heredity disposition, something else must trigger the disease. They supported patients' feelings that stress was closely associated with the disease and flares, probably because of its relation to HSP (Heat Shock Protein) one of the major suspects now under investigation (see report of Annual Japanese Doctors and Scientists Conference).

It may be possible that different members of the same family would have different autoimmune diseases.

Another issue discussed was that of the use of too much drugs in the western world. In Japan the belief is that when a treatment does not work it should be replaced, rather than supplemented, although in some cases two different drugs can be used as complimentary to each other. When they heard of patients taking 26 different kinds of medicine a day they were quite shocked, as they were quick to point out the drugs used for BD can be very harmful. Particularly when used in high dosages over a long period of time, these medicines can leave a lot of residue in the liver, causing more sickness. Moreover, often the various drugs can interact, leading to undesirable effects.
The doctors are urging patients to try to reduce their intake of medicines, of course only with the consent and cooperation of their attending physician!

Our tour was given to us by Dr. Oka, who started with the hospital, where we visited the out-patient and in-patient clinics of internal medicine. We were introduced to other doctors, some already famous, some young but promising, and had the honour to meet a Behcet's patient who was hospitalised at the time.

During the tour the various experts mentioned some interesting facts. Prof. Hotta (see report of Annual Japanese Doctors and Scientists Conference) found that patients can have lesions on their brain even when not presenting any CNS symptoms. He said it is also possible to present CNS symptoms but not have any lesions.

We also heard that the first thing done with patients suffering from GI Behcet's is a change of diet. Starting with a fast and moving on to what is called an elementary diet, then keeping one or two out of three meals a day elementary, while having "normal" food for the other meals. The first stage is done in order to cleanse the GI tract, while the other is an attempt at balancing diet and mental needs, as the doctors understand it is difficult to commit to a strict diet on a long term basis.
Details of the special diet may be released in future, but the whole process should be done under the supervision of one's attending physician.

We then proceeded to the School of Medicine, followed by the research institute, where the rat/mouse lab and radiology room are located. This is where mice and rats are created to specifications (see report of Annual Japanese Doctors and Scientists Conference) in order to try and figure out what causes Behcet's and how to treat it. Apparently, mice with HLA-B51 did not develop Behcet's under laboratory conditions!

This research facility was made possible thanks to Prof. Mizushima, now an MP, who invented and patented a medicine for treating joint inflammation. It is contained in microcapsules which lead the medicine straight to the area of inflammation, where it is then released slowly. The money from the patent helped build the centre in which so much more research is being done now.

I was given a wonderful booklet written recently by Dr. Matsuda et al, which contains a lot of old and new information about the disease, including detailed medical explanations, research reports and Q&A sections.

Dr. Matsuda and Dr. Oka have been helping BOW patients for a few months, and their contribution can not be expressed by words. We are grateful for their help and appreciate the time they take for answering questions, treating patients across the world, and of course this visit.

BOW wish to thank Dr. Matsuda and Dr. Oka for this wonderful and informative visit.

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