“The PKD Foundation and groups of other people who are living with this disease, that for us has been the biggest form of support, and it’s what helped us to get to a point of believing that it was going to be okay.”
The PKD Foundation and groups of other people who are living with this disease, that for us has been the biggest form of support, and it’s what helped us to get to a point of believing that it was going to be okay. That’s been a really wonderful resource for us, because it gave us just immediately a sense that not only are there other people dealing with this, but there’s someone trying to do something about it, because the initial information that there isn’t a cure for this is really, really hard. So, when we found the Foundation had support groups and had walks and had informational videos, that was a great place for us to begin to feel a little hopeful.
In our first trying to understand PKD and what its impact is on our family, because it’s not something we’d ever been exposed to, the PKD Foundation was a great site as well as other places online, just learning more about the disease, the prognosis of the disease. When you have a newborn, he’s got his whole life ahead of him. You have to figure out what that could be for him, how that changes for him how that changes for us as well, and obviously now at the same time or relatively the same short window of time, my wife got diagnosed, what her prognosis is, what things do I need to prepare for for that, and the Foundation did a great job and provided great resources of just understanding. I’m a science-y guy. I need to understand the process of things, and so being able to understand the disease process helped educate me, gave me a lot of comfort of what to expect.
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