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Kidney Month Challenge: Tell someone new

For this week of National Kidney Month, our challenge to you was to tell someone new! Spreading the word is an empowering thing you can do for the community, no matter how PKD affects you. To show this, we asked our Marketing Specialist, Tierra Hogan, a non-patient, and our San Antonio Walk Coordinator, Patti O’Grady Ruffin, a patient with a family history of PKD, to tell us a bit about their sharing experiences:

Tierra Hogan

For National Kidney Month, I reached out to members of my family and their coworkers and asked if I could film while educating them about polycystic kidney disease. Although some were reluctant, they agreed. None of them had ever heard of PKD or even knew that March was National Kidney Month. I gave them a brief overview of the disease and showed them an average kidney compared to a polycystic kidney.

In the beginning of our interaction, all of them had uninterested expressions, probably hoping that this would be quick–which is to be expected when someone asks you to watch a slide show in the middle of a workday or in the evening when your favorite T.V. show is on.

After seeing the difference between the two kidneys and realizing the seriousness of the disease, something amazing happened: listless expressions turned into curiosity; by the end of our conversation, a genuine concern with a desire to learn more had taken root.

Even though I do not have PKD, it felt good to share valuable information for a cause that dramatically affects a large community. I was happy to educate others and I hope that by sharing this information, they will feel inspired to share or find ways to get involved.

Patti O’Grady Ruffin

PKD has greatly impacted my family: affecting my grandmother, uncles, dad, three of my siblings, and myself. I was diagnosed at age 16 and experienced all the usual side effects—pain, kidney infections, high blood pressure, etc. One of the upsides was that PKD actually helped me get my first job. I began working as a medical secretary for nephrology at age 19. That job taught me so much and had excellent care, but it was then that I realized how little was known about PKD.

At age 49, my PKD had progressed to the point that I needed to start hemodialysis. A coworker came forward to donate a kidney, and in 2005, I had bilateral nephrectomy, liver resection and transplant. I recovered well from my surgeries and reflected on how I had this second chance at life. One week later, though, my sister lost her battle to PKD at age 54.

Five years later, when I was 54 myself, I retired from my career in the medical university setting and knew it was my job to step up as the Walk Coordinator for the PKD Foundation’s San Antonio chapter. With support from volunteers and the San Antonio community, especially media, we are getting the word out about PKD. I sport my PKD attire regularly, which often prompts people to take an interest and ask me what PKD stands for. Many people have never heard about PKD, and many have become volunteers after learning more.

Getting the word out has even reminded me how small the world can be: while promoting PKD, I have learned that an old high school classmate, a neighbor, and a person I know from church are also impacted by PKD. I never let PKD change my life, rather I chose to continue to raise awareness for PKD anywhere and everywhere I can.

How has your experience telling someone new about PKD gone? Share in the comments below!

Comments

  1. maureen gardner says:

    Thanks for sharing your amazing story Patti. My daughter was also diagnosed at age 16- almost 12 years ago now. We quickly became involved with the Pkd foundation. We have learned a lot and been very involved with the annual walk. We were able to start a walk in our own city of Rochester NY- called The Western NY Walk. My feelings have always been to bring as much awareness as possible to people. Thanks again for your great story!

  2. Patti Ruffin says:

    Thanks Maureen – While we all have different manifestations of PKD even within one family, I have no doubt that our continued drive to raise awareness for PKD will ensure we get closer to our goal to find a cure for PKD. Our San Antonio Walks for PKD are full of information and my new PKD family members through our continued association.

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