A silver lining to everything in life…

5 07 2012

Following my previous post I received an email from Elaine Benton, an incredible woman, that shared her personal experience with a Gaucher disease and Parkinson disease.  I wish to share her story with you and to encourage you to visit her amazing blog.  Thank you so much Elaine for your inspiration!

‘Writing as therapy’

 

by Elaine Benton

I was born with Gaucher disease, a rare disorder, caused by a genetic mutation from both my parents, resulting in a deficiency of a specific enzyme (glucocerebrosidase) in the body. The missing enzyme affects the liver, spleen, bone marrow; a patient can suffer severe bone pain, bone deterioration in particular damaging joints, and various additional symptoms such as bleeding and anemia.

I was diagnosed at the age of 5; little was known about this disease back then, and the prognosis looked grim. The only way of testing for Gaucher in those days was a painful sternum puncture performed under general anesthetic. The doctors felt that a child with Gaucher in my condition with an enlarged spleen would not live much past puberty!

I starting writing stories and poems when I was quite young, expressing myself on paper, which I now realise, was therapeutic, but at the time I simply enjoyed it. I grew up, finished school, started working, and married a wonderful man. I became pregnant and after a normal uneventful pregnancy, I gave birth to a healthy baby. I am now 49 years old; I guess those doctors who gave such a poor prognosis back in 1968 were very wrong. Suffering a chronic rare disease had a distinct effect on me, moulding me into the person I am today. I was never afraid of dying and as a child, believing I didn’t have very long to live, gave me the ability to enjoy every moment I have, no matter where I am, or what I am doing. I grab life with both hands and make the most of it. I have a strong fighting spirit and my sense of humour remains intact.

Twenty two years ago, I met Professor Ari Zimran, who specializes in Gaucher disease and it was an unforgettable moment. Just seeing the small simple sign that said ‘Gaucher Clinic’ was an extraordinary feeling. For the first time in my life, I sat before someone who knew about Gaucher disease; understood what I had been through, had advice and information to offer. Finally I had a ‘place’ to go and a knowledgeable doctor who would take care of me. After years of feeling isolated; no treatment or information, no support group, left in the hands of people who had never heard of Gaucher disease, I can’t express enough, the gratitude I feel towards this Professor for deciding to make Gaucher disease his life’s work. Twenty-one years ago, when the first medicine became available I started enzyme replacement therapy by infusions, initially at the hospital, but thankfully, ‘home treatment’ was eventually put in place improving the patient’s quality of life, by not spending countless hours in hospital on a regular basis.

As if suffering a rare chronic disease was not enough, five years ago, at the age of 44, I was diagnosed with Parkinson’s disease. My life became very difficult indeed now struggling with two diseases.

In 2011, I wrote a collection of poems which was made into a book about living with Gaucher and Parkinson’s. For me it was very therapeutic in a cathartic sense, but what was even more astounding; I found others suffering chronic disease could relate to my poems. From personal experience I’ve written with stark honesty and humour, something that neither patients nor doctors have read before which has captured attention world-wide. I have poured my heart and soul into this book, giving a fresh perspective from the patient’s view.

My book gives doctors the opportunity to understand completely a patient’s story, not merely medical facts but the emotional side of suffering a rare disease; how a patient really feels. Today we realise there is a link between physical medical issues and the emotional attitude. What started as merely a few poems has spiraled into an entire project, resulting in me writing a daily blog http://elainebenton.blogspot.com/ on wide-ranging topics sufferers can relate to, letting them know they’re not alone in their daily struggles. People around the world are reading my blog and contacting me, and I reply personally to each one. I have been speaking at various organisations, groups and to student doctors, for I believe there is need for education and greater awareness heard directly from patients. I had the great opportunity of being invited to give an oral presentation in June 2012 at The First International Congress of Narrative Medicine and Rare Diseases in Rome, and hopefully will be speaking in London in October 2012.

This entire project has given my life purpose, keeping busy, making me feel I have something of value to contribute which is highly important in sustaining me; probably the best medicine I could have received. My book has become of interest to doctors; encouraging empathy, and understanding better those who suffer chronic disease, which ultimately benefits both doctor and patient.

Although my life is not easy suffering Gaucher and Parkinson’s, there is a silver lining to everything in life. You’ve just got to know how to see it! No matter what disease a patient may have, it’s the state of mind that counts. It’s very easy to fall into depression and wallow in self-pity, but I advise being cheerful and putting a smile on your face, making the best out of a bad situation. I am very fortunate to have a supportive husband and family around me, and couldn’t wish for better medical care. So despite adversity, I have a lot to be thankful for. I hope that more doctors adopt narrative medicine as an additional valuable tool, helping patients cope better with ill health and that it becomes an integral part of medical care.


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5 07 2012
Aviva Shelter

amazing women!

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