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דף הבית>>פרסומים >>Creative Therapy

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Creative Therapy

by Elaine Benton

I was born with Gaucher disease, (a rare genetic predominantly Jewish Ashkenazi condition), and at the age of 44 was diagnosed with Parkinson’s. I have always loved writing poetry and stories; particularly in recent years I have found writing to be highly therapeutic in a cathartic sense. I recently wrote an abstract entitled "Writing as Therapy” which was submitted to the Italian National Institute of Health in Rome. Some weeks later, I received the good news that not only had my abstract been accepted, but I had been invited to give an oral presentation in Rome.

I was naturally thrilled as being asked to speak in Rome was an honour, not only would I be representing Gaucher patients, enabling me to bring greater awareness to a rare disease on an international platform, but also be the sole representative from Israel. It was also significant for me to attend, since the past year has been an extraordinary series of events, leading me on a journey of sorts. It was in May 2011 that I wrote a collection of poems that turned into a book "Parkinson’s, shaken, not stirred”; established a Website, began writing a daily blog, http://elainebenton.blogspot.com/receiving e-mails from sufferers and caregivers worldwide, which I personally reply to each and every one. I began public speaking hoping to further education about Gaucher and Parkinson’s disease and taking part in a new programme to familiarize student doctors with chronic patients. This great opportunity of speaking in Rome appeared to be the culmination of all that had transpired in the last year.

The congress seemed tailor made for me; "Narrative Medicine and Rare Diseases” - to narrate, telling a story, is one of the things I do best, and I certainly qualify for the category of rare disease, being born with Gaucher. I was delighted to be present, taking part in the "First International Congress of Narrative Medicine and Rare Diseases”, on June 4th 2012, and we were warmly welcomed. The participants of the Congress were mostly distinguished professors, doctors, researchers and academics in the medical field along with a few patients like me, suffering from a rare disease. Simultaneous translation headsets were available, although much of the Congress was in English. After an introduction by the Chairlady, the opening lecture was given by the renowned Prof. Brian Hurwitz, from King’s College London.

It was my turn next to speak and was formally introduced, given 15 minutes to speak, and an extra five which stretched into ten minutes for questions and answers. There were some very interesting and pertinent questions, but time was limited. My presentation went very well indeed and from the applause and reaction, I could see that I had touched the audience with my story. During the morning coffee and lunch breaks it was a good chance to mingle with the other guests. There were a number of interesting speakers throughout the day and several poster presentations. The Congress finished in the late afternoon with a closing speech, again from Prof. Brian Hurwitz.

Battling Gaucher and Parkinson’s, I am not in good health, so for me it was a very long exhausting day, but I was extremely happy and satisfied that it had been a success. I was asked by the organizer if I would like to return next year, to which I said "yes”. Speaking from personal experience and from my heart, I gave a fresh perspective from a patient’s point of view which caught their interest. I spoke to a room full of prominent people in the medical field about Gaucher disease and therapeutic writing and have since been informed that my presentation will be published by the Italian National Institute of Health in the ‘Congress Proceedings Report’ which will be in English.

www.elainebenton.net

http://elainebenton.blogspot.com/

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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