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My Journey of Seeking the Dermatology Treatment in England - And the Eventual Journey to Dr Maebashi in Japan

Y T-G [London, England] Female Age:39

I'm Japanese and have been suffering from a chronic skin disease for more than 20 years. It is called "Shouseki-nouhou-shou" in Japanese, which literally means "a illness with the pustules on the palms and soles". In my Japanese-English medical dictionary, it is called Palmoplanter Pustulosis (Latin name : Pustulosis palmaris et plantaris) though I'm aware that there're some different English names around. The name itself pretty summons up its principle symptoms. The palms, fingers, soles, and toes are all affected by the numerous small pustules and thick flaking skin. At the same time, the skin becomes very raw and easy to split and breed, in particular on the soles, so walking around becomes very painful.

Fingernails and toenails are both disfigured and sometimes completely fall off from the bottom. Some people develop a disfigurement of the chest/shoulder bones which causes strong pains around those areas as well as skin symptoms. In my case, the symptoms have been almost entirely concentrated on the skin and nails.

Despite having had numerous medical tests, any of the doctors at the hospitals in Japan couldn't find out the exact cause of my disease. Along with that, I had a series of different treatment for my skin. They sometimes gave an initial improvement, but nothing worked in the end.I moved to London, England, around 9 years ago. Here I met an English man and we got married soon. As I settled down here for the long term, I had to think about what I should do to deal with my troublesome skin disease still ongoing.

1.Conventional or alternative treatment?

In England, up to my marriage, I treated my skin myself with the steroid ointment which my mother sent from Japan time to time. But now I wanted to seek out the medical professional help available in England.

Here we don't go to the general/specialist hospital direct. Following the usual step, I went to see my GP (General Practitioner) for the initial consultation. To my surprise, he told me that he never heard about Palmoplanter Pustulosis before. Apparently it's not known here at all and I had a great difficulty to explain what my skin disease was exactly like. That particular time my symptoms were much better than usual, which didn't help to let him understand the true extent of this horrible disease. Still, at least I managed to get hold the prescription for the steroid ointment from him. (This experience made me abandon the idea of using proper name of my skin disease to the medial professional and the normal people alike. Since then, whenever needed, I just tell people "it's a sort of eczema.")

To gain maximum understanding and get a reference to the skin specialist from my GP, the next time my symptoms started getting worse, I deliberately left it without the steroid ointment treatment. It got much worse, more than I expected. I showed it to the GP the next time and asked him to refer me to the Homoeopathy Hospital in the central London, which he agreed. I had been interested in homoeopathy for some time, since I read in the British health magazines that there were many evidence of it giving a noticeable improvement to a number of skin problems, and I wanted to give it a try. In Britain, patients are offered free conventional medial treatment under the NHS (National Health Insurance) system apart from the drug prescription fee. But only a few "alternative" medical treatment, including Homoeopathy, are offered under the NHS, and this particular hospital was one of the only two practices where I could get Homoeopathy free of charge under the NHS in the whole of Britain at that time.

I was put on the three months' waiting list for the appointment, during which time I kept (just left untreated) my symptoms bad deliberately in order to help the homoeopath to understand my skin problem. Sure enough, the homoeopath who I saw there didn't know about my illness, but he diagnosed that my problems were caused by the sluggish metabolism after the detailed consultation. He prescribed three different kinds of tiny homoeopathic pills and told me whole varieties of strict dietary advice including to avoid caffeine, which were really tough to follow and this prospectus made me rather depressed. Although I followed his advice as much as I could and took the pills diligently, there wasn't any improvement of my symptoms. Eventually I gave up after several consultations over the period of six months.

My symptoms continued to progress really worse. I told my GP that homoeopathy didn't help me and asked him to refer me to the other kinds of "alternative" medical treatments. After all those years of my experience in Japan, I was fed up with the western style conventional medical skin treatment which heavily rely on steroids. We decided to try Acupuncture and I went to see the Acupuncturist who comes to my GP's surgery once a week and offers his treatment free under the NHS. However, as soon as he heard about the history of my symptoms, he decided it was too chronic to be treated with Acupuncture and told me that he rather want to refer me to the Chinese Herbalist instead who he knew.

Initially I was reluctant to try his idea because in Japan I had already tried the Chinese Herbalism without much success. But he explained that the particular doctor had a high success rate among the patients with skin problems at the famous Great Ormond Childlen's Hospital in London. At that time my symptoms were so bad that I decided to give it another go.

The Chinese Herbalist I saw prescribed me blue tablets to take internally and packs of dried herbs to make an infusion to soak my hands and feet every morning and night. She was very confident of the effect of them would have on my skin. When there wasn't any improvement after a few months' treatment, she added the muscle plaster style medical patch for my soles, saying "Gosh! What a stubborn case……!" However, it didn't make any difference. In the end I again gave up not only because of the lack of improvement but also because of the high cost of her consultations and prescriptions, both of which were private (not covered under the NHS) so I had to pay all myself.

Then, following my GP's advice, I went back to the conventional treatment option. This time he referred me to a big hospital in London called St Thomas' Hospital. (Their dermatology department originally used to be a different specialist hospital called St George's Hospital for Dermatology.) Even here doctors didn't know about my disease, and the young doctor who saw me at the initial consultation recommended PUVA (ultraviolet light) treatment after the whole examinations like the skin patch test. Before starting the treatment once in fortnight, I had to sign to the consent form declaring I was aware of the risk of the skin cancer involving this treatment. At the treatment I firstly soaked my hands and feet in some solution to make them to absorb UVA easily and then stuck them into the UVA illuminator. I was told to treat my skin at home with the steroid ointment and the moisturising cream and also to soak my feet in the warm water with some moisturiser added in at night.

After finishing a series of treatment at the hospital over several months, the principal doctor there saw me with a group of interns and checked the progress. I told him that there wasn't any notable improvement since I started the PUVA treatment. He said "now there is only one kind of the treatment left you to try, which is to take the steroid internally. However, there is a greater risk that it will damage your liver by the side effect than that it will make any difference to your skin. I rather suggest that you should compromise and just use the steroid ointment and the moisturiser for the rest of your life if they've been able to manage symptoms to more or less the acceptable level." In short, I was denied any hope of the improvement, or, needless to say, the cure of my skin disease. It didn't shock or upset me so much though --- I was too much used to this kind of response anyway. It was around 3 years ago.

A year later we moved into the different area of London and registered a local GP there. My symptoms had been really bad. I asked my new GP to refer me to the state registered dietician as I started to suspect that the food allergy or the food intolerance might be causing my skin troubles. The doctor denied this idea saying it wouldn't affect just the hand and foot if the food allergy/intolerance was the case. Another doctor in the surgery, whom I sought the second opinion, expressed the same opinion. After all, I was prescribed a stronger steroid ointment and a stronger moisturiser to use in the foot bath.

2.My Mother Goes to Akita to See Dr Maebashi

Around that time, my husband installed some software which allowed me to use the Japanese language on his English environment computer. I started using the internet in Japanese (I had already been on the Internet for a some time in English) and then, one day, via the notice board (BBS) in Japanese site about my skin disease (Shouseki-nouhou-shou), I reached the homepage of Ms "Akitakomachi" (Chiwako Mogamiya) which told me about Dr Maebashi and his treatment using biotin. This was in spring 2001.

I made an international phone call to my mother in Japan and told her that I had found a good specialist of my skin disease in Akita, northern Japan, and suggested that she should read Ms "Akitakomachi"'s homepage with the help from my father. (She's not computer literate.)

My mother has been suffering from arthritis in her upper chest, which is caused by the same disease as mine, Palmoplanter Pustulosis (Shouseki-nouhou-shou). About 10 years ago, all of sudden, she developed a very sharp pain around her chest up to her shoulder. Time to time the pain was too severe even to sleep at night but orthopedists in Japanese hospitals never could find the cause. Then around 5 years ago she also started developing the very itchy eczema with small pustules all over her body including the palm and sole, which dermatologists couldn't find the cause, either. It was only recently that her doctor at last pinpointed the link between the bone and skin symptoms in her case and diagnosed as Palmoplanter Pustulosis and the arthritis caused by that.

Unlike my mother, I had never suffered from the suspected pain around the upper chest by my disease. I even didn't know there was such a arthritis symptom connected to this skin disease. During the 1980's and 90's I saw lots of doctors in Japanese hospitals regarding my disease, but none of them ever explained or even asked me about this other symptom. So, naturally, I never considered my mother's chest pain was connecting to "my" skin illness. Looking back now, I can think of some instances when I felt a bit of pain between the bones around my upper chest or at the joints of my jaw, but they always went away within a couple of hours without the need of painkillers so they never really bothered me.

I telephoned my mother again and suggested that she went to Akita and see Dr Maebashi. Akita is far away from Chiba, near Tokyo, where my mother lives, and she was reluctant to travel down there on her own as she had never travelled such a long way and stayed in a hotel in an unknown place alone. She kept on insisting she would wait and go to Akita with me when I visited Japan to see my family in the next October. However, the pain in her chest seemed to take its toll and she gathered all her courage and made a trip alone to see Dr Maebashi in the National Akita Hospital in June, 2001.

3.My Turn to Start the Biotin Treatment

In October the same year I myself went to the National Akita Hospital with my mother and saw Dr Maebashi. The X-ray examination showed that there was only a small disfigurement in my bones around the chest and the back, in spite of me having had suffered from this disease for more than good 20 years. I feel very lucky to be able to see Dr Maebashi before the symptoms on my bones developed much worse. I only wish if I could see him or some other doctors who had the same deep knowledge and understanding as he had about my disease and its biotin treatment much earlier. It would have helped not only me but my poor mother suffered "unknown" pain.

Since then we're continuing on the biotin treatment, me in England, my mother in Japan. Whenever we make an international phone call, our conversation gets into the topic how our symptoms are at the moment. I've got very relaxed attitude about the speed of my skin improvement and don't expect any overnight miracle at all, especially as I developed this disease for all those 20 long years.

I'm so grateful to Dr Maebashi. He's a born medical researcher with a great fighting spirit (towards an established and commercial oriented Japanese medical world), and has got a relaxed and imaginative attitude with a sense of humour, and is able to think in his patients shoes. He's a doctor in a million and a treasure for us suffering from Palmoplanter Pustulosis. I'd also like to thank the nurses, the pharmacists, the medical technicians, and other all the stuff at the National Akita Hospital. And I don't know how I can express my big Thank You to Ms "Akitakomachi". Her web site is so easy to navigate and the contents are very comprehensive. It's a very impressive site. As soon as it added an English version, I let my English husband read it.

And last, but not the least, I'd like to thank all of Dr Maebashi's patients who answered the questionnaires and sent letters to the site sharing their own experiences of the disease. As someone mentioned on another page in this site, it is very inspirational and encouraging to read the fellow suffers' tales. I'm sure that their tales give a nice push to make a step towards Akita for the people who are suffering from this disease but hesitating to go down there. I'm determined to continue my biotin treatment not only for myself, but for my family in Japan, who have been worrying for such a long time, and for my husband and his family here in England, who are always very sympathetic to my troubled skin.

[At the end of the year 2001]

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