“The more we talk about it, the more we show people that we’re living with this, that it doesn’t have to be something that stops your life in its tracks.”
I know that PKD and illness in general is a really personal thing, and every person in every family is going to deal with that differently, but for us, advocacy has been such a powerful tool. I would certainly encourage anyone who has PKD to speak about it. Every time it becomes a little bit easier, and to become part of a support group or a local walk or any type of group that’s going to help you be able to process living with kidney disease.
Taking over the PKD walk here in Charleston was really an empowering thing for us, because it gave us a platform to talk about PKD in a hopeful way, and it’s the one thing that it felt like to us that we could do.
We’ve been contacted through the PKD Foundation by several people who are just learning about having PKD, and we’ve met some really wonderful people at our walks. For us it’s been really great to be able to talk to people and say, “Everybody’s case is different, but you can live with this.”
I’m able to work, and I’m able to dance, and Owen goes to school, and he does karate, and we’re very fortunate with the stages that we’re in that we’re able to do those things, but our goal is to do those things for as long as we can.
For the most part, the best way for us to deal with it is to continue to talk about it and to advocate. For us, we feel like that’s what we can do. The more we talk about it, the more we show people that we’re living with this, that it doesn’t have to be something that stops your life in its tracks. That’s how we deal with it at the moment.
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