Recently I represented PKD Australia and gave the following talk at a PKD Seminar in Melbourne.
I started morethanpkd.com to counter the lack of inspirational and positive information I found online when diagnosed. A speaker I heard at a business conference recently talked about work/life balance, what really matters and how to live healthy and happily.
This got me thinking about the question so often asked by people with PKD – what can I do, for myself, in the face of a disease I cannot control? And I thought how everyone takes pills prescribed by our doctors, almost without question, but it’s funny how it’s so much harder, and we offer so much more resistance, when asked to change our lifestyles.
So if, like this speaker, our doctors told us to turn off all technology an hour before bedtime, keep technology out of our bedrooms and go to sleep earlier, would we? Or to do yoga, stretch, meditate and seek to reduce stress in our lives each day. Or to replace our meat and 3 veg dinner with a salad, would we? Could we get up and watch the dawn and fit sunsets into our lives, to reconnect with nature and improve the way we feel every day?
I think that whilst the researchers search for a cure for PKD, what we do for ourselves every day is to do what everyone could do for themselves to be healthier every day.
Imagine if we, whom have the odds stacked against us with chronic disease, were to answer the call and light the way to everyone around us, setting an example through our actions, as being the healthiest person everyone around us knows? What a profound effect it can have on others when people look at us and go “Wow, she/he has PKD and yet look at what she/he is doing, what’s my excuse?”
What we can do is be brave, take control of our own lives, focus on what we can do, what we can control, and what really matters, to live the healthiest, happiest and most balanced lives we can.
It is reassuring to know that we, with PKD, are not being forgotten or neglected in spite of having a little known disease. Until recently I really wondered if there was any research going on in Australia into PKD. There was no info around and it seemed that whilst every other part of the world was getting Tolvaptan approved as a treatment, nothing was happening here. I am glad to say I was wrong. Some pretty brilliant people do in fact care…
I am currently a participant in a Hydration Study looking to discover whether prescribed hydration volumes have any effect on PKD. I’m in the control group so that pretty much means life goes on as normal. For those in the test group they have to drink specified amounts of water each day for durations of many months before their bloodwork and MRI results will be taken again and compared.
I am also participating in the SONG-PKD Study which is a questionnaire and focus group based study into establishing core outcomes for PKD research based on the shared priorities of patients with PKD, their family and health professionals. This is an international study being run out of the University of Sydney – pretty cool hey?
Thirdly, I was lucky enough to be invited, along with the PKD Australia board, another PKD sufferer, a PKD treatment drug rep and Sarah the CEO of PKD Australia, to tour the research lab of the PKD, Heart Disease and the Sympathetic Nervous System Study at Macquarie University Hospital. Professor Jackie Phillips is the guru here who led us on an informative trail around the facility, on crutches after breaking her hip in a cycling fall (she and I have a lot in common it seems! What a trooper!). We met various passionate members of her team (scientific geniuses we reckon) who are exploring the interaction between PKD’s effect on the kidneys, the messages being thereby sent to the brain and heart and visa versa. These guys are exploring our body’s conversations to understand the cycle between kidney disease causing cardiovascular disease and cardiovascular disease then compounding kidney disease, in PKD. I learned that there are a variety of strains of ADPKD and ARPKD and we were able to view microscopic imagery of healthy kidneys versus PKD kidneys – always a pretty confronting thing when you see all those black holes where the good kidney tissue should be but isn’t in PKD. Hopefully the Macquarie Uni team’s research will lead to early intervention strategies to prevent the development of heart disease in PKD. Along those lines, I have also discussed with Jackie whether anyone might run a specific study into diet and PKD. Jackie said she would like to so I cross my fingers that someone someday soon will, in the hopes that this might lead to a more informed empowerment of patients with PKD.
PKD Australia is currently also funding, via grant monies, two other studies into PKD – one looking at drug treatments to slow cyst formation and another into the stem cell behaviour and genetic differences in PKD compared to healthy kidneys; in the hopes of developing stem cell therapies in the future.
So; are we being ignored? No way, far from it! Is there hope? Yes, absolutely! And best of all the fact that we even know about these studies and are being invited to interact with the researchers heralds a new dawn in which researchers connect with the real humans they are working to save, with a greater degree of public information and transparency. And the real humans are able to better contribute to research and access up to the minute information (and hope) that may well, one day, save their lives. This is definitely a step in the right direction for all chronic diseases and especially PKD.
© morethanpkd.com | 2016
Last month I attended the launch of the PKD Foundation of Australia (PKD Australia), the only organisation in Australia dedicated to finding a cure for PKD.
As the Foundation’s inaugural Ambassador I was asked to give a short speech on the need for financial support of the research to find treatments and a cure for our disease. I spoke from the heart to make the point that people like me are doing the best we can to stay healthy but that no amount of clean eating and fitness can change the fact that PKD is a progressive and as yet untreatable and incurable disease. This is not a battle we can win alone so we need financial supporters to join with us in this fight for our lives.
It was wonderful to meet other people with PKD for the first time as most of us had been living it alone until now, except for on the online forums which aren’t quite the same as meeting in the flesh. The people I met were all around my age, professionally employed and active. Their stage of kidney failure, symptoms and PKD experience varied widely proving how this disease so differently affects each person.
It was also fantastic to see the first research grants awarded by the Foundation and to chat with the recipients. As a PKD sufferer you feel alone and wonder if anyone is doing anything to try to find a cure. It is hard to keep up to date with the science because a lot of information doesn’t seem to be freely available online. So it was incredible to converse with the people who are right at the coal face of current knowledge and research. I hope that it was just as exciting for them to meet us and see the human face behind the lives they are working to save. I asked each researcher to please keep me up to date with the latest news on their studies and in what’s going on with PKD so hopefully I can post this info up onto morethanpkd.com regularly.
For more info about PKD Australia and how to can provide support, please visit www.pkdaustralia.org
© morethanpkd.com | 2015