When I think back to my PKD cyst bleed episodes in middle school and high school, I realize I did not talk to many people about what was happening to me. My parents, doctors and school nurse were the ones aware of my condition. If I were to talk on a personal level of what I was enduring, it would be with my parents. I don’t recall talking much to my closest friends about what I was going through. It seemed to be a separate part of my life. I did not know any other person battling PKD, except my family members.
My mom did not talk much to others about our family disease. This makes me wonder if many do not know what PKD is because it is hereditary. If someone has cancer, the news spreads quickly through the family and on to their friends. It seems quite different with PKD. Is it because (minus the spontaneous mutation patients) we have people in our family battling the same disease? Our family members walk in our shoes and can provide a certain level of support and guidance, which leads us to refrain from reaching out much beyond them.
Technology has changed quite a bit since my transplant almost 13 years ago. I did not have the Internet to find information about PKD and transplant support groups. Today, there is a lot more communication and support online as well as through local PKD Foundation Chapters. For those of us who are a part of a local Chapter and online support groups, it seems like there are a lot of people talking about PKD. However, when I share my story at events and hardly anyone knows what PKD is, or someone has a puzzled look on their face when I say PKD, I continue to wonder why. Polycystic kidney disease is one of the most common, life-threatening genetic diseases. It affects thousands in America and millions worldwide – and yet, many people have never heard of it. Is it because PKD is a family disease?
When I learned of the PKD Foundation in 2004 and founded the South Central PA Chapter of the PKD Foundation, I entered a whole new realm of support and learned there were so many PKD families in my community and around the world. Families who broadened my hope, positivity, knowledge and determination. Meeting them and volunteering for the PKD Foundation fueled my passion to not let anyone else battle PKD alone. The family part of my disease has grown immensely and I am grateful for each and every one of you.
Why do you think many people do not know what PKD is? How can we change this? If you tend to be a quiet PKD patient, would you be willing to share why?