What the PKD community wants you to know about polycystic kidney disease:

That it is an invisible disease. Just because someone looks fine on the outside doesn’t mean their insides are being torn up.

Research can and will save lives.

It affects people’s quality of life.

That is affects hundreds of thousands of people in the US and millions worldwide. Everyone probably knows someone with PKD even if they don’t know it.

That it is one of the most common genetic diseases affecting many people in our community.

The illness that is hidden to other peoples eyes, and the pain and rollercoaster it is for the person suffering with this disease.

How truly devastating this disease can be for a family.

The different scenarios there are with ARPKD. Children living with the disease and infants passing from the disease.

That just because it’s not something you can physically see doesn’t mean the person isn’t going through it.

That getting the best medical care and having a strong support network is vital to navigating PKD.

I wish people knew how strong the families who are effected by PKD are. We are the strongest people who are ready for a cure and will take every step necessary to help all who are effected by PKD.

I wish people knew how far reaching into the generations of families and friends of those battling PKD leaves in its trail!

I wish more people understood how debilitating this disease can be some days, when the rest of the time you look totally ‘normal.’

That for many it’s an invisible illness, that can stop life in its tracks when it catches up with you.

Knowing the symptoms associated with PKD. Being more understanding of what we’re going through.

PKD is a dynamic disease and is different for everyone. Talking about treatment and prevention in many perspectives and situations is indispensable.

I wish everyone that is around people that have PKD to be more understanding of the symptoms that vary day to day.

Organ donation is so key for those of us with this disease!

I wish people knew more about how PKD affects families and friends, not just the person with PKD!

It’s emotionally and physically challenging.

It is frightening thinking every day your kidneys are filling up just a little bit more. And you just have to hope it goes slow enough to live your whole life.

That it is the most common genetically inherited disease, yet so few people know about it. That it affects my family, and probably more families than we realize. That there is no cure and we need one!

That the cysts are not your average cysts.

How it truly effects people and what they go through just to do normal tasks. That effects more people than you know and that the people who are living with it are true warriors.

How many lives are taken by ARPKD.

PKD will eventually lead to dialysis or a transplant but it is a different time frame for each individual.

Just because you can’t see the illness doesn’t mean it isn’t real. And no, cranberry juice won’t make it go away.

I just wish people knew that you don’t have to look sick to be going through a disease.

PKD doesn’t discriminate on race gender or age! PKD effects everyone differently!

That even though you don’t look sick it can be very painful.

The every day struggle of living with it and balancing it.

That there is more than just bad kidneys. How some days it messes with everything.

PKD advances diffently in each patient!

That it’s not easy to live with but is manageable.

That it is more common than we think. And that are people working towards a treatment.

How painful and stressful the symptoms can be.

Don’t judge a book by its cover. We go about our daily lives looking and acting healthy on the outside, but have miserably large, painful, cystic kidneys that aren’t working as they should on the inside or worse – kidneys that do not work at all.

That it is different from polycystic ovaries. The amount of times a doctor has got confused thinking I have polycystic ovaries is unreal!

I wish we could educate people that our kidneys are incredibly complicated organs and a failing polycystic kidney will affect endless numbers of metabolic systems in the body … despite this, so many PKD patients display remarkable resilience.

More than one person in a family can be diagnosed with PKD. BUT we are family and we will never give up!!

What is PKD?

Polycystic kidney disease (PKD) is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure. With 600,000 Americans and millions worldwide living with PKD today, chances are high that you know someone with the disease.

Why raise PKD awareness?

The more who know about PKD, the more resources we can dedicate to finding treatments and a cure. PKD Awareness Day is our opportunity to step up our efforts and gives us a platform to widely spread the word, share stories and encourage others to learn more. Let’s raise the bar on PKD Awareness Day and come together as a united front to spread the word about this disease further than we ever have before.

Raise your voice online using #PKDAwarenessDay.

Awareness Checklist

Update your social media profiles and post about why we need to build awareness and support. We’ve gathered the following resources for you to share on social media to help you get started:

  • Social profile pictures
  • Social graphics
  • Infographic
  • Videos

TAKE THE TEAL PLEDGE

Raise your hand if you’re ready to take the Teal Pledge! By taking the pledge, you can become an ambassador to the cause and help us spread the word about PKD Awareness Day.

Pledges:

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GO TEAL FOR PKD

Go teal this PKD Awareness Day and raise some noise on social media! Teal is the official color of polycystic kidney disease.

Use our custom profile frame to show your friends online that you’re serious about PKD awareness.

Get your gear from our online store to show family, colleagues and everyone you meet that you support our cause.

Download and share our end PKD icon across your social media profiles to spread the word.

GO TEAL FOR PKD

Go teal this PKD Awareness Day and raise some noise on social media! Teal is the official color of polycystic kidney disease.

Use our custom profile frame to show your friends online that you’re serious about PKD awareness.

Get your gear from our online store to show family, colleagues and everyone you meet that you support our cause.

Download and share our end PKD icon across your social media profiles to spread the word.

SHARE THE FACTS

Awareness starts with education – help us educate more people nationwide about PKD! When you share these videos and graphics with your friends, you can spread the word about how PKD impacts the lives of patients, families and caregivers.

SHARE THE FACTS

Awareness starts with education – help us educate more people nationwide about PKD! When you share these videos and graphics with your friends, you can spread the word about how PKD impacts the lives of patients, families and caregivers.

VOICES OF PKD

Members of the PKD community are resilient, courageous and strong. Read the stories to learn about the men, women and children living with PKD.

"Today, all the more, I live my life to the fullest. I choose joy instead of fear. I declare joy over sadness."

"I donated my kidney to a stranger April 2017. I have been a nephrology nurse for over 30 years and understand the challenges of living on dialysis. Also, my husband and daughter have polycystic kidney disease."

"To have an incurable disease can sometimes feel unbearable, but it can also make you humble and strong, just like my dad!"

“The PKD Foundation has been a source of hope. My hope for the future is that a cure for ARPKD is discovered."

Raise your voice! Share your PKD story to put a face and a name to this disease and help others learn why raising awareness is so important.

TAKE ACTION

Walk with us!

A cure is our finish line. Find your local Walk for PKD and help us move PKD research forward.

Raise the stakes nationwide!

Join our voice on the Hill to help educate your elected officials about how they can help end PKD!

Get involved!

Become a volunteer with your local Chapter to help support others in your area impacted by PKD and make a difference!

TAKE ACTION

Walk with us!

A cure is our finish line. Find your local Walk for PKD and help us move PKD research forward.

Raise the stakes nationwide!

Join our voice on the Hill to help educate your elected officials about how they can help end PKD!

Get Involved!

Become a volunteer with your local Chapter to help support others in your area impacted by PKD and make a difference!

You can make a difference! When you give to the PKD Foundation, you further our mission to give hope by helping us fund research, advocate for patients and build a community for all impacted by polycystic kidney disease (PKD).