Updated: Sep 15
If you're reading this, chances are you have Polycystic Kidney Disease (PKD) or you know someone who does.
Did you know that this genetic disease affects 1 in 400 to 1,000 people across the globe? That's a lot of lives impacted, but also a lot of voices to speak up for the cause.
As someone who has knowingly lived with this chronic illness since the age of 17, I've had a long time to ponder what it means & to come to terms with my prognosis (mostly). You can read more about my story here.
Learning how to socialize my health challenges is yet another hurdle in this journey, so I want to share some of what I've learned with you here.
I'm a total introvert so speaking up has never really come naturally, until now.
Firstly, the PKD community is nothing short of amazing. We are a powerful group and I'm proud that we're pushing for more information, research & better outcomes.
The challenge I encounter regularly is how to raise more awareness of the disease in the public eye, especially as we try to move towards finding a cure. We need to get the word out to the world that our efforts deserve attention, require more research & are in great need of funding.
The helpful people around us who aren't aware of what we're up against, can't support us (yet).
So, how can YOU give a voice to this disease?
1. Talk about PKD with your family.
I don't just mean in passing, I mean REALLY talk about it.
Giving a voice to PKD starts at home, where you're most comfortable. Talk about PKD until it's a normal part of family dialogue.
Discuss all the intricate details, how it's affected each generation, your hopes & dreams for the future and how you can make a difference as a family unit. Consider what your PKD legacy will be!
2. Let your friends in on what you've been experiencing rather than hide the truth.
This one is easier said than done, especially if you're a young adult just trying to live a "normal" life before reality sets in.
I didn't share my story with my best friends until my early 30s and their reaction blew me away. I had been fearing looks of pity and awkward questions, but I was met with compassion and a genuine interest in how they could help.
If I could offer one piece of advice to my younger self it would be: honesty is the best policy. Be your true self with your friends and who knows what doors will open.
3. Share your personal story on social media to reach others who are eager to listen & learn.
Social media is the most efficient way to spread news of any kind, so why not use this avenue to bring about change? Successfully sharing a message online is all about your approach & and your attitude.
As we all know, life with PKD has many challenges, but, rather than get weighed down by negative aspects, try to shed light on the opportunities & your efforts to make change, because that is truly motivating!
This is what I'm trying to accomplish on Instagram (@pkd.nutrition) by sharing educational information, being open about my personal journey and helping people to feel more empowered in theirs.
4. Join a community; there is power in numbers.
This once again points to the power of social media.
If you want to become an advocate, but you can't find your voice, link up with others who share your desires and speak up as a group. You can garner attention for a mission without shining too much light on yourself as a individual.
5. Dig into the research and know the facts.
Having a good understanding of the science helps you to deliver impactful messages, backed by research, that may sway the right people.
What you say as a PKD patient and/or advocate really matters, so having the means to start fruitful conversations and become part of the solution is paramount to the cause.
Knowledge is power and education is key.
6. Ask questions of professionals to encourage them to strive for better care, to be flexible and to push for answers.
Listen to your medical team, but make sure you have a good understanding of what you're told and challenge anything that doesn't make sense. If we don't do this, nothing changes.
In other words, don't settle for the status quo, help the medical industry better understand your needs (and concerns) so they can be on the lookout for opportunities to improve & evolve.
7. Register for an event through your local PKD foundation.
Keep fighting, spreading the word & pushing for change!
Together, I know we can make a difference.
Registered Holistic Nutritionist (RHN), real food advocate, PKD warrior & advocate