I think people would be surprised if they knew how many PKD patients live close to them. I spent a little over a decade after being diagnosed at age ten without ever knowing or crossing paths with anyone outside my family with the disease. The only reason that changed was because I founded the South Central Pennsylvania Community of the PKD Foundation in 2004. By taking this major step, my PKD family grew in spades and in a very positive way.
Since PKD affects generation after generation, we usually know many people in our family battling the disease. I think this might be why some patients don’t talk about PKD as much as they talk about other diseases or seek support, because they already get it from their family. I think it is important, however, to build a strong community and foundation of support around us.
When I became Community and Walk Coordinator for the South Central Pennsylvania Community, I received the contact list for my hometown and was amazed to see how many PKD patients lived so close to me. I called everyone on the contact list and set up my first support group meeting. That day was the start of a beautiful journey of building a PKD community for myself and for others.
Through Community meetings, walks, and events, friendships quickly blossomed. I learned so much, and grew as a person and a patient. I wished I’d had this sense of community and support when I was growing up with PKD. I made it a personal goal to inform others that they were not alone and to provide support to them.
It is amazing to experience and see the instant bond that forms when PKD kindred spirits meet and start talking about their lives. We get it. We understand what it is like to live with the disease, and it is so refreshing to talk to someone that can truly relate and have sincere empathy. I’ve experienced this countless times and watched it unfold before my eyes as our support group meetings grew in size and our bonds grew stronger.
It is so encouraging to know that there are other patients going through the same process, forming the same bonds. We should not have to battle this disease alone. Our family’s support is vital, but support from others is needed as well. We can choose who we surround ourselves with, and since starting the Community in Pennsylvania I have been blessed with amazing PKD friendships and support.
I find it hard to imagine my life before I met other PKD patients outside my family. My journey has grown richer since building a community of support in PA. Since moving to California, I have been lucky to join the local Sacramento Community and connect with more amazing individuals that are now a part of my PKD family and circle of support. Some of my closest friends are people I have met because of PKD. We like to call ourselves “the silver lining to PKD.”
Support doesn’t always come to us; we may have to seek it ourselves. If you are looking for a support system, I encourage you to reach out to your local Community or build your own community. You are in control and have the power to choose who you will share your beautiful journey with. Most importantly, know you are not alone.
Are you involved with your local PKD Community? If so, please share how this has helped you? I urge you to connect with your local Community today.