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PKD Education and Engagement

“Get involved and get engaged.”

Sean Williams


Things I would say to somebody whose family members are recently diagnosed with PKD, a couple of things that come to my mind is one, there’s a lot of information out there.  Make sure it’s from a good source.  Get good information from the right people.

The PKD Foundation is a great source.  Your physicians are a great resource, and the other piece I would advocate for is get involved and get engaged.

Engaging in advocacy as a caregiver not a patient with PKD has definitely changed sort of my approach to things.  One, it gives me a lot of passion to speak about—I see Owen who’s 7.  I want to change the world for him.  I want to change the world we live in for him, but I want to change the world of PKD more specifically for him, and it gives me a lot of passion when I’m speaking with folks, but it does put me at a little bit of a disadvantage, because I’m not the one afflicted with the disease.

I don't have PKD. It’s hard for me to have that conversation with the view that I’m actually a patient when I’m not.  So, I don’t ever try to put myself in that perspective, but I want to hear different patients’ experiences and, we don’t know what PKD has in the future, but what it has for different people is very impactful and very varied for everybody.  So, learning that’s been a big help for me.

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