At the heart of the matter

Thoughts from a PKD Researcher – Jackie Phillips, Macquarie University

How did I get here? 

My introduction to PKD was through high blood pressure, my research area, and a chance discussion with a veterinary colleague who mentioned they had a strain of animals with what looked like PKD. I already knew kidney disease was linked to high blood pressure and so began my journey in 2005.

Fast forward 10 years and I have published 20 articles about PKD ranging from identifying a genetic mutation, anaemia, abnormal heart function, brain wiring to novel treatments for hypertension. Along the way I have met amazing researchers trying to work out how the gene mutations result in disease through to clinicians who’ve helped me understand treatment priorities.

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PKD patients, top of my list

Guest Post By Anne-Marie Desai
Renal Dietitian

This being my first blog, I thought I would tell you a bit about myself and why I signed up to provide to help PKD Australia. My first experience with PKD occurred when I was working in Boston, USA where I was fortunate enough to be working with a wonderful physician whose main research interest was PKD. Through this experience I met many inspirational patients living with PKD and realised that there was a whole subgroup of patients amongst the many people that I was seeing on dialysis.

Returning to Australia, and after a few years of working in paediatrics whilst my children were young, I have again returned to the renal world and now work with patients at all stages of the renal journey. Once again, I have found this subgroup of people with PKD who just get on with things despite the health issues they face. I know you shouldn’t pick favourites, but patients with PKD tend to be at the top of my list of people I enjoy working with.

So you may be wondering what a renal dietician actually does?

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Myths about Organ and Tissue Donation

Fact: 1600 Australians are on transplant waiting lists
Fact: 44% of Australians have not made a decision about organ donation
Fact: 40% have not discussed their decision with loved ones

Research by the Organ and Tissue Authority reveals shows some common myths discouraging Australians from organs and tissue donation.

MYTH: It’s better to just let my family decide at the time
FACT: If you want to be an organ or tissue donor, please tell your family. The main reason families decline donation is because they don’t know what their loved one wanted.

MYTH: Organ and tissue donation is against my religion
FACT: Almost all religions support organ and tissue donation as an act of compassion and generosity. Donation processes can accommodate religious and cultural requirements.

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