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.
Last week I was in a meeting pitching morethanpkd.com’s planned initiatives to a potential partner. I had finished explaining how PKD is a genetic and usually hereditary disease and it’s nature and effects. The male representative of the potential partner firm then asked me about my triathlon training and I made a comment about loving getting up early for training and seeing the dawn everyday. He jokingly quipped in response “You only like waking before dawn because you don’t have kids yet! Just wait till you do! You won’t like it then!”. He and his female colleague laughed heartily. I chuckled uncomfortably at the inadvertently horrific nature of the joke. It was one of those times in life where if you don’t laugh you’ll cry.
I ask all these questions because in my meeting that gentleman made that joke with no malicious intent but with complete disregard for what I had just told him about PKD being a genetic condition and what might be inferred from that information. You see, I have PKD (genetic mutation). I had Nephrotic Syndrome (also genetic). I carry the gene for Lupus. AND I have severe Endometriosis which is so painful that I still cannot have sex after having had excision surgery and treatment two years ago. It is likely that I cannot bear children and if I were to it could have very negative consequences for my health. I also would not wish my set of genetic short straws on even my worst enemy, let alone create a child so at risk of suffering. The only saving grace is that I had always said I never wanted to have children, even before I found out the full extent of the genetic burden that I carry.
It still hurts though. I went through my teens and twenties being asked and interrogated over and over again about when I would have kids and why I didn’t want them. I was told time and time again that I would change my mind. This personal invasion was agonising and made me feel less and less like a ‘real’ woman. I was suffering depression at the time and these conversations hit deeply as I struggled not to retort that the world was such an awful place that I could never inflict its horrors upon a new human being! I would tell people that if I was to ever change my mind I would adopt and care for a child that was already here. This was always met with the response of “But they’re not your own and your partner’s flesh and blood. It’s not the same”. I couldn’t for the life of me understand this selfish obsession with creating a ‘mini-me’. I personally couldn’t see any great need to try to replicate myself, nor any other average person for that matter. Nor could I fathom how people could neglect their own parents in nursing homes whilst asking me why I wouldn’t want to bear someone to look after me when I get old?
I do have to admit though that when I was diagnosed with PKD and Endometriosis a part of me did die inside considering my fertility. It wasn’t because these were the nails in the coffin of my decision not to have kids but because I felt like my RIGHT to choose not to have them had somehow been stolen by these diagnoses. I felt that I lost some of my freedom of self-determination and I mourned this for a time. Having these conditions did at least give me a ‘good’ reason and a way to hit back hard against those who pry too far. Nothing shuts someone down faster, and makes them regret their words more than answering “Do you have kids?” with “No. I can’t” followed up with their “Oh, I am so sorry!” being countered with my “Well, I’m not”. And the old “Why don’t you want kids?” repelled with “Because I have an incurable degenerative condition for which there is no treatment and I do not wish to pass it on”. These answers, I hope, serve very well to teach people how inappropriate, sensitive and personal these questions are. I hate to think what it feels like for women who want children but cannot conceive. It’s time that asking about, or commenting on, a woman’s fertility becomes as taboo as religion and politics as a conversation starter.
Personally, I have determined that I am here on this earth to love all, not just those of my blood line. I run a business where I care for and invest heavily in the wellbeing of my staff so that they can be happy and healthy parents and look after their families and community. My business and now morethanpkd.com are my babies. I gave birth to them (it was very painful each time), have nurtured them, been hurt by them, sleep deprived by them exhausted by them, shat and vomited on by them and have proudly watched them learn, grow and achieve. FTD has helped hundreds of individuals and families conceive of and bring into the world children of their hearts and minds. These have been in the form of businesses/livelihoods by which they have been able to fund the raising of their human children in turn. Morethanpkd.com provides inspiration, information, and projects aimed at raising healthy, happy and active individuals to reach their potential. These babies are the conduits of my passion and my love. As plant based organizations I hope that both FTD and >PKD will also shape a better world for the human, animal and plant children of this planet.
The universe, for whatever reason, has directed me to nurture in a more broad and conscious fashion. To build a business, in my own image, that looks after me now I am older and provides me with the freedom to set up an NFP to support others, this planet, and its children. Through this, I aim to leave a positive legacy and honour the world that raised me.
© morethanpkd.com | 2016
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