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My colleague and dear friend, Florence Kranitz, president of the CJD Foundation, USA recently sent an email to a family member overseas who was desparately trying to find a treatment or cure for his mother, who has been diagnosed as having CJD, by reaching out to people around the world. I would like to share this email as it shows the fustration that all families feel, the need for hope that in reality is not there and the importance of our ongoing support for our dedicated researchers. Suzanne

I understand you are trying to find some hope but in the process you are asking the impossible. I too lost someone I loved very much to this disease and I too hoped against hope that the tests and the doctors were mistaken. I finally had to accept the diagnosis and realize there was nothing humanly possible I could do to change it. My son is a physician so we had the best possible care but it didn’t change the results. When I finally accepted the inevitable I was able to focus on being with my husband and lovingly care for him without continuing my frantic search.
I don’t know any other advice to offer except to say that, from my vantage point at the other end of the world, you are a wonderful son who has done everything humanly possible for your mother. Believe me, I and my international colleagues wish more than anyone that there was something, a treatment, a cure, anything… but sadly there just isn’t.

Perhaps it might be time to focus your energies in a different direction.

I wish you peace, strength and resilience
Florence

FAMILY STORIES

 

Amy's Story - May 2011

Amy is not her real name but her story is very real and highlights the need for more involvement of well informed geneticists and genetic counsellors in Australia. Although there have been some significant and positive changes the progress is slow and the CJDSGN will continue to advocate for improvements as family members have requested. We would also like to thank a number of genetic counsellor who have become dedicated to supporting and assisting CJD families.

There was no family history of genetic CJD and Amy was reassured that her father was not suffering from a genetic form of prion disease as he did not fit the criteria. Even before autopsy results confirmed CJD Amy received the results of the DNA genetic test in a bizaar way. Her father did indeed have a genetic mutation for familial CJD. This news left this young woman devastated and fearful for her young family. Part of Amy's story was presented at the NeuroPrion 2011 conference but this is the unedited version.

click to listen to Amy's story (audio)

 

Terry's Blog - April 2011

Terry and her husband Gary live not far from San Francisco in the USA. They met in 1978 and married 4 years later. They have 3 children now ranging in age from 17 - 24 years. In June 2009 Gary noticed that Terry was becoming forgetful and confused and by August 2009 something was obviously very wrong. An MRI indicated that Terry was suffering from CJD and since this time she has been cared for at home by Gary with assistance from hospice carers and friends. This has enabled Gary to continue to work to care for their three children and provide what he and Terry always wanted for them.

Almost 2 years later Gary continues to care with help for Terry who is now in a hospital bed in their bedroom. Terry's blog provides information for families on what to expect especially with the more unusual and less rapid forms of Creutzfeldt-Jakob Disease.

Terry lost her battle with CJD on 17th May 2011, the very day that her story was presented as part of the CJD International Support Alliance presentation to 600 assembled researchers and experts attending NeuroPrion 2011 in Montreal, Canada.

http://forterryb.blogspot.com/

 

In Memory of our daughter Judith

This is Joan's story in memory of her daughter Judith. In May 2010 Judith began to suffer from some minor symptoms, by June 2010 she was diagnosed as suffering stress due to a heavy workload. Judith passed away on 15th July 2010. This is a tribute to Judith and the contributions she made to the pharmacy industry especially in her home state of Tasmania.

You can downoad In memory of our daughter Judith as a PDF file here.

 

My Letter To John

This is Carolyn's story and her letter to her beloved husband John, who died of CJD. John wanted to know what he was suffering from when he was ill, but Carolyn had no idea. Now she wants to tell him and explain in this letter.

Written by Carolyn Weepers. Edited by Amy Willesee.

You can download My Letter To John as a PDF file here.

 

No White Flags

In loving memory of Helen Ferry.

You can download No White Flags as a Word DOC file here.

 

Mandy's Story

This is Mandyís story. It details the journey through her fatherís geneetic CJD experience. Written with a deep love and respect for her father, it highlights her personal feelings, thoughts and beliefs as she and her family cared for her father in his final months and experienced his death on August 23rd, 2004.

You can download Mandy's Story as a PDF file here.

 

Ruth's Story

This is a very personal piece of writing consisting of a diarised account of the last 2 weeks of Graham Brown's life as experienced by his wife Ruth.

You can download Ruth's Story as a PDF file here.

 

PUBLISHED ARTICLES

All About My Mother

Amy Willesee's article published in the Good Weekend, Sydney Morning Herald on 16th February 2008.

You can download Amy's article as a PDF file here.

 

The Lethal Gene

Published in the Sydney Morning Herald on 24th October 2005 – author ‘Jennifer Cooke’: Download here

 

Catherine's Story

This is Catherine's story published in Dean Lecture Series, Faculty Of Medicine, Dentistry & Health Sciences- University of Melbourne.

'Debate in Human Genetics' The Brave New World of Genetic Testing.

You can download Catherine's Story as a Word DOC file here.

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