Sharing Our Story

Heidi, who is the Hudson Valley PKD Chapter Coordinator, invited TJ and I to share our PKD stories such that they might be used for publicity purposes for this year's Walk for PKD. We finally got around to filling out the necessary paperwork tonight after TJ finished up his homework. Here are TJ's responses to some of the questions which were asked on the form. Since its not something we tend to discuss much, I found it very interesting to hear his perspective.

2) Please provide a summary of your experiences with PKD. (We’re especially interested in details such as whether you’ve had a transplant, how many people in your family have PKD, when you were diagnosed, what your health is like now, etc…)

My mom was diagnosed with PKD before I was born. Her being pregnant with me took its toll on her kidneys and three years later, she needed a transplant. She now has to take several medications a day on a time schedule in order to keep her body from rejecting the kidney. In order to possibly find a cure for this disease, I have raised more than $1000 through the Walk for PKD and hope to raise even more this year.

3) What is your hope for your family’s future and the future of PKD?

I hope that my brothers and I do not have the disease and if we do, that we can help find a cure through clinical trials.

4) Why do you support the PKD Foundation and its vision that “no one suffered the full effects of PKD?”

I support the PKD Foundation because it is the only organization that devotes the funds that it raises to the awareness and research of this disease which the US government pays relatively no attention to, even though it is more common that several other diseases it pays more attention to. I feel that the government should pay more attention to this disease because it affects more of the population than these other diseases.