FROM STORIES

The Women’s Disease

Guest Post-  Janice Creenaune

My name is Janice Creenaune and I have PKD. My mother has PKD. Her sisters had PKD and my daughter has PKD. In my family, through the generations, it was always known as the ‘Women’s disease’. Most, living in the country areas, had limited care. Records are limited. However, I knew of nobody outside of my immediate family who suffered from the disease.

All of you suffering from PKD have a story associated with your illness and many of you have far more complicated conditions. Yet we have much to learn from each other.

I was officially diagnosed almost 20 years ago after I had my three children. I knew there was no cure and very little I could do about it. I was working full time (occasionally overseas) and bringing up my kids.  It was a busy time. And I told nobody because there was little point and I had few symptoms at that stage.

However, my attitude has since changed for many reasons.

  1. As I aged I did begin to have serious blood pressure issues.  I was increasingly tired…often finding it difficult to walk up hills. I did develop a small aneurysm, which we are currently monitoring and attempting to control blood pressure. I realised the PKD was affecting me.
  2. I also realised PKD did affect other conditions as well. My mother’s experiences showed the high blood pressure from her PKD and other conditions were extremely volatile.  Her crisis situations in ICU often showed that few medical workers had any knowledge about the disease. Experts were consulted, but that all took time and in crisis situations it was serious. I realised I had to be responsible and take control of my own situation.
  3. There is often guilt associated with passing on the gene, some regret having children, although this is not my experience, and my daughter is here tonight.  Others wanted to sue their parents for passing on the gene. Of course, when diagnosed it can be a complicated matter and personal reactions may reflect this. Some may need counselling.  Some may need dietary support, others may just need a friend who understands. But we all need advice.
  4. I researched further, was lucky enough to attend a seminar in Sydney and realised research was happening, and people working on my and your behalf. And yet I was doing nothing to assist the cause.  Then PKD Australia (in their wisdom) asked me to a meeting in Sydney and I agreed to try my best to assist. They convinced me to talk openly about the disease and make others aware, Funding was necessary for research and why would people donate if they have never heard of the disease?

 

We decided we would try initially for a seminar in Wollongong.  I had no idea how to do it? My teaching skills offer plenty of experience in organisation, but privacy issues necessarily dominate. I did not know how to contact professionals. Even who the doctors were or which other medical professionals could possibly be interested.  Robert, the chair of PKD Australia put me in touch with dietician Kelly Lambert. She enthusiastically assured me she could address all my issues and it was only then that I was convinced that the seminar would work. With Charmaine Green from PKD Australia joining the organisation I was confident. Together we organised a successful evening that hopefully helped a lot of our PKD community understand more about PKD and the research that is happening.  Thanks also to the Renal Centre here in Wollongong for hosting the event and offering support where needed.

The research happening in reducing the size, growth and effects of cysts on the kidney, and in particular, gene research, which may eventually wipe the gene out completely is exciting.   Further funding is necessary and every dollar counts.

I was keen to talk to many of the attendees at the Wollongong seminar and gauge the need for further support groups, fundraising and general friendships that may aid each other. There is hope for the future and I am excited to be playing a part in it. Thank you to PKD Australia for all their wonderful work.

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