VALEN KEEFER: Hi. My name is Valen Keefer. I’m a spokesperson for the University Kidney Research Organization. I’m here to share my story of how my life has been impacted by kidney disease and the vital need for kidney research. There are 25 million American men, women, and children who suffer from kidney disease and many of them don’t even know that they have it.
I was diagnosed with polycystic kidney disease at the age of 10. PKD is one of the most common life-threatening genetic diseases, which affects 600,000 Americans and 12.5 million people worldwide. It is more common than cystic fibrosis, muscular dystrophy, hemophilia, sickle cell anemia, and Down’s syndrome combined. With this disease, the normal kidney is about the size of your fist and with PKD, the kidneys can grow to as large as the size of footballs. Cysts form in the kidneys and eventually deteriorate the function There is no cure. Dialysis and transplantation are the only treatments.
Everyone on my Mom’s side of the family has been affected by polycystic kidney disease. My mom at the age of 55 is the oldest to survive in our family. Her mother died of PKD. My aunt died of PKD. And there’s a 50 percent chance of passing PKD on to your children, and it’s been passed down to myself, my brother has it, and he has passed it on to his son.
I was diagnosed with polycystic kidney disease when I was 10 years old. I was at my pediatrician for a check up and had sky high blood pressure of 160 over 140. I was immediately sent for an ultrasound and cysts polluted both of my kidneys. At that point, I was diagnosed with PKD. I was told that it was one of the best diseases to have as it was slow progressing, and that I should follow the same family history as my Mom’s and not be affected until my late 40’s to early 50’s, but unfortunately, that wasn’t the case for me. And I dealt with a lot of cyst bleeds throughout high school, which put me in the hospital many times. The worst was when I started college. I was in the hospital for three months in Pennsylvania and my cysts wouldn’t stop bleeding and they didn’t know what to do. At that point the doctors had given up. Thanks to my parents I found the team of doctors at Johns Hopkins Hospital and I was admitted there for the next eight months and during that time, my team of doctors made some very difficult, but life-saving decisions and thankfully I am still here today because of them. During that time, both of my kidneys were removed. I was put on dialysis, had pancreatitis, and dealt with many health issues until finally I received a kidney transplant on August 13, 2002.
When I woke up after my transplant, I felt amazing. I could feel the gift of life that was given to me. It restored my health, gave me a new lease on life, and led to my passion today, which is helping others. I found the courage to keep going thanks to the love and dedication from my parents. Their unconditional love gave me strength to keep fighting. I also credit my positive thinking. I never mentally gave up. I never thought that I was going to die.
My passion to help others started in 2004 when I founded the south central PA chapter of the PKD Foundation. I organized fundraising walks and educational seminars and did many speaking engagements that ranged from speaking to the Congressional Kidney Caucus in Washington, DC to conventions. Over time, I’ve spoken at over 70 events and to more than 5000 people.
I have received various awards. In 2005, I was named the first ever DaVita “Kidney Idol”. I received the “Celebration of Life” award from the Susan P. Byrnes Health Education Center. I won the Astellas “Ride of a Lifetime” contest and rode on the Donate Life float in the Rose Parade. And I was the subject of an award-winning biography titled, My Favorite American.
The University Kidney Research Organization was founded by entertainment lawyer, Kenneth Kleinberg, who in 1999, was diagnosed with FSGS. He experienced renal failure and received a transplant in 2007. UKRO was established in Los Angeles as a nonprofit organization providing support for kidney disease research. UKRO’s mission is to support medical research related to the prevention, treatment, and eradication of kidney disease.
Research is so important. My transplant saved my life, but transplantation is not always an option for everyone, and there’ll never be enough kidney donors to go around. I hope that I can say someday that I have played a small part in helping to end kidney disease so that others won’t have to endure what I have. It means so much to have this national platform to share my story and help others. I am now around nine years post kidney transplant and take about 20 pills a day. I am dealing with the long-term side effects of my immunosuppressant drugs and am now pre-diabetic. This showcases the vital need for research and the extreme importance for funding so we can provide a healthier tomorrow for others like myself.
Please join me in supporting kidney research by making a donation to University Kidney Research Organization at ukrocharity.org. Your gift will fund research to prevent, treat, and find a cure for kidney disease. I fight for a healthier tomorrow, not only for my family, but for yours. Thank you for your support.