There have been numerous times throughout my PKD journey when I have been in a medical facility, such as the emergency room, and have had to explain what polycystic kidney disease is to a staff member. On several occasions, while providing my health history and informing the medical staff that I had a kidney transplant, they have responded, “So you received two kidneys?” I informed them that a kidney transplant recipient only receives one kidney. I am puzzled by the lack of knowledge of PKD. Why is it that not many people know what PKD is, in spite of the fact it is one of the most common, life-threatening genetic diseases?
I was diagnosed when I was 10 years old and it was not until my early 20’s that I knew there were so many others living with this same ailment. I do not want other PKD patients to live that long feeling, alone, while battling this disease. I want the world to know the powerful truths of how ugly and devastating PKD is. How so many of us have lost loved ones because of PKD and have supported loved ones while they fought and continue to fight this disease. How we have a 50% chance of passing PKD on to our children. I would like people to know there is no cure for PKD. That dialysis and transplant are the only treatment options. I want others to see how resilient PKD survivors are and determined to find a treatment.
I have shared my PKD voyage at more than 80 public events. I use social media: Facebook, Twitter, Instagram, and this blog to educate and inspire others. I drive around with a license plate that reads: END PKD. My email is pkdwillnotbeatme. I use this email address, so that every time I must provide it to someone, I am raising awareness. My mission and passion is to do all I can for the vital cause of PKD awareness and have others join me in saying, “PKD Will Not Beat Me!” I know it seems frustrating at times, wondering if our voice is heard. I believe it is. As more of our PKD family joins together, our voices will be heard even louder and clearer.
“No matter what people tell you, words and ideas can change the world.” – Robin Williams
Thursday, September 4th is #PKDAwarenessDay. A day for us to use our individual voices and let the world know how important our disease is. Everyone has different comfort levels when it comes to talking about PKD. Tomorrow we can “Give PKD a Voice,” “Share the Facts,” and/or “Take Action.” Please visit pkdcure.org/awarenessday to learn more. Feel free to raise awareness in your own unique way, whatever inspires you. There is not just one single way to raise awareness. We can do it a multitude of creative ways – sharing our story, posting a video, doing a challenge, etc. Have fun with it!
Every day is a good day to spread awareness! With the NFL football season kicking off as well on Sept. 4, let’s ‘punt’ PKD to the curb as we spread PKD awareness.
What ideas do you have to share and/or what do you plan on doing to raise awareness of PKD on Sept. 4?