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by Clara Berta Inwentarz

First of all I'd like to thank you for giving me the chance of reaching other persons who are suffering from this illness. I expect to be useful describing my own experience and bringing out another point of view.

My name is Clara, and I live in Buenos Aires, Argentina. This is the first time I write something for a magazine and, being Spanish my own language, I hope that you'll be able to understand my English.

A year ago, in May 2000, I received the diagnosis from the laboratory: it said: "Pemphigus vulgaris". As I had never heard those words before, I went to my PC to search for them in the Web. Fortunately, I could find your site. After reading a few words, I became very upset: I had a mortal disease! It was the first time in my life that I had a very serious illness.

At 50, I was under a very hard emotional stress: my mother was dying. At the time, my first blisters appeared in my left breast where I had had an operation a few months ago.

Of course, I immediately started the treatment prescribed by my doctor Rodolfo Milicich (Hospital Italiano): a daily dose of 40 mg of Prednisone at first. Then, after a few weeks, the dose was gradually increased to 60, 80 and 100 mg (October and November). At the same time I was receiving a gold injection, once a week.

I became very weak and could hardly walk, but I in spite of this, I walked a lot: about 4 km each day.

Now, in May 2001, I'm taking only 10 mg of Prednisone a day and a gold injection every 15 days. I can't believe it! My doctors say that I am getting better than other patients. Perhaps it's because simultaneously with the medical treatment I have been doing other therapies to strengthen my Immunological System. They are not alternative therapies because they do not replace the medical treatment.

I searched for a psychoanalyst specialized in skin diseases. Fortunately, I found a very good one, Alicia Costa (Hospital Durand), and began psychotherapy with her. Thus, I started to speak about myself, my problems and my emotions. Little by little I was becoming aware of the psychological reasons, and the circumstances that favoured my illness to appear.

My Immunological System had been very debilitated because of a series of very sad events that I had been suffering in the last years.

I could realize that my blisters appeared in my skin after having a hard emotional stress, so, every blister seemed to say something to me in its own language, something like: "Be more careful with yourself", "Try to be happy" or "Don't let them hurt you"...

Well, of course it's not so easy. Unluckily, it's not only a question of will, because a lot of painful feelings that lie deep in our psyche don't permit ourselves to be happy or to do a lot of things that we'd like to do.

I think that every illness has a special meaning for every one of us, and it's necessary to find it: we must reach our inward feelings and thoughts and bring them out, to the surface. This process is therapeutic, it helps us to feel better, and so, we can improve our health.

Through art, for instance, we can express ourselves and our feelings, we can see our emotions and listen to them. In this way we are able to understand ourselves and our illness.

We only have to choose a material to work with: music, clay, wood, pencils, brushes, oil, watercolor, etc, and a good teacher-therapist. I chose clay, papier-mâché and wool and began making dolls, figures, little animals, and tapestry. (You can see us working and enjoying ourselves in www.waltercostas.com.ar).

It was by chance then, that I read something about "Hoko San" or healing dolls as an aid in sickness. The Japanese made them of papier-mâché. If put into the bed of a child suffering from an incurable illness, the figure would attract the disease to itself, and the child would soon recover.

So we can see how other disciplines like mythology, anthropology, psychology, art or history, teach us a great deal about ourselves because we are something more than a group of cells working together in a chemical process. Every one of us is a very complicated thing, a whole, with feelings, emotions and thoughts that affect our body in many and unpredictable ways.

If we work with our hands, for instance, creating objects, drawings or paintings, we can project ourselves there, in the object created: we put there our most inner and fearful feelings, perhaps the feelings that we are afraid of talking about, the feelings that in some way or another, weaken our body and soul.

We have to recover those wonderful activities that made us happy in our infancy: creativity and playing. These are the things that help me to strengthen my Immunological System and improve my health: taking the medicines, speaking a lot with my psychoanalyst, creating beautiful things with my own hands, having a very good sense of humour, walking a lot and, of course, reading the Quarterly.

I'd like to know your opinion, please write to: This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

 
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2007 Annual Meeting

(Excerpt from the Quarterly, Issue 50, Fall 2007) This year we celebrated the 10th anniversary of our Annual Patient/Doctor meetings in Toronto, Ontario, Canada. By holding this year’s meeting in Canada, we were looking to give our partners outside the U.S. an opportunity to experience the expertise and camaraderie that our meetings offer.

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