My PKD Life: Finding Empowerment & Purpose Through Nutrition
My name is Ciara ("Kee-ra") and I'm a Registered Holistic Nutritionist in Toronto, Ontario, Canada with a real passion for kidney health.
I was diagnosed with Polycystic Kidney Disease (PKD) at 17, halfway through my final year of high school. The disease is prevalent in my family and I knew there was a 50% chance I'd test positive.
At the start of my journey, I was told there’s very little that can be done to slow the progression and that was very tough to accept. Well, it was tough to accept as a young adult, but now, it's impossible to accept.
PKD is a genetic disorder that causes many fluid-filled cysts to grow in the kidneys. Overtime, kidney function declines and many patients require dialysis or transplant.
I inherited PKD from my mum; she, along with 3 of her siblings, inherited it from her dad. Unfortunately, my grandfather passed away before I was born (he was only 53).
With medical advances, increasingly accessible information & new approaches, the outcomes are changing for many of us with PKD. Every generation fairs better than the last, which gives us great hope for the future.
I went back to school to study nutrition in part because I craved more knowledge around food and how I could use it to better my chances of having a bright future.
As of 2021, two uncles, one aunt & my mum have all been transplanted. They are true warriors and have inspired me greatly throughout my own journey.
I watched & listened closely growing up surrounded by people with this disease. I'm blessed that this was discussed at the dinner table and I was somewhat prepared for my own diagnosis.
Now, the focus is shifting to my generation, of which I am the oldest. Myself, my little sister & multiple cousins are all living with this disease.
While I hate that so many of us will be challenged by this, I find comfort in knowing we're in this together.
I also find comfort in knowing there are small steps I can take every day to better my health. This way of thinking has helped me to feel empowered, and just in time...
I'm mid-way through my 30s and things are starting to change.
Two months ago (Spring 2022), I was hospitalized with my first "complication" - I had a cyst rupture (ouch!) while I was out jogging.
The funny thing is, I made it through my twenties relatively unscathed. In fact, sometimes I even felt invincible and thought maybe this wouldn't really affect me!
I lived (partially) in denial but stayed active, ate fairly well and enjoyed myself as much as possible. Looking back, I'm glad I took the opportunity to live this way!
It wasn't until I became a parent that I took a much more proactive approach to managing this disease. By this time, I was also starting to feel the impact of having enlarged, cystic kidneys.
Thankfully, in my late twenties/early thirties I had two healthy pregnancies that brought me two amazing little humans.
Everything I do, I do with my family in mind.
I’m turning 35 this year and I’m more determined than ever to make the most of this life.
It's Time For Change --
I was told that "not much" could be done to change the outcome of this disease. Thankfully, I am able to take small, supportive steps everyday and that feels like something.
So here I am, inserting myself into the conversations around Polycystic Kidney Disease, especially those about nutritional intervention because this is where we can have some control.
I believe it's time we start leveraging the mantra "food is medicine," and turning to our kitchens & pantries to build up better health. We need to simplify nutrition for this community, promote real food and get this conversation going (check out my PKD Nutrition & Wellness website here).
I’m facing this head-on, doing everything in my power to have the best life possible, and, I truly hope I can inspire others to do the same.
Come follow me on Instagram: @pkd.nutrition
Registered Holistic Nutritionist (RHN), real food advocate, PKD warrior