Guest Post – Vanessa Cullen
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!
Thirdly, I was lucky enough to be invited, along with the PKD Australia board, my Dietician Dr Sean Kirsten and another PKD sufferer amongst others 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 and 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 also learned 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, Sean and I also discussed with Jackie whether anyone might run a specific study into diet and PKD. Jackie said she would like to so we cross our fingers that someone someday soon will, in the hope 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 hope 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 we real humans are able to better contribute to research and access up to the minute information that may well, one day, save their lives. A positive step in the right direction for all chronic diseases and especially PKD.