Voices of PKD Blog
August 09, 2022

Ciara Morin, Toronto ON | Voices of PKD

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!

WRONG.

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.

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

xo

Ciara

 
Be sure to check out Ciara's Blog, here!
In 2023, Ciara shared a blog post with the PKD Foundation of Canada, on her experience with self-advocacy. You can read that blog post here. This story led to a popular and well-received session at our 2023 PKD Summit on "Being Your Own Best Advocate". You can watch the video recording of Ciara's presentation here.
Finally, Ciara gave us an update on her Voices of PKD story, specifically on her experience with family planning and PKD, in December 2023. You can read that story here.

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