Adolescent PKD patient works for a cure
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The purpose of this study is to determine if treatment with a medication called Pravastatin will help slow down the progression of kidney and heart disease in ADPKD patients. Medications like Pravastatin have been shown to decrease inflammation and slow down progression of kidney disease in animals with several types of kidney diseases including ADPKD. Additionally, Lisinopril is a drug that is taken to block a hormone called rennin-angiotensin-aldostrone which has been proven to case high blood pressure and cyst growth in ADPKD patients.
Each participant in the Denver study is given Lisinopril or a similar medicine for high blood pressure, but the Pravastatin is administered as part of a double blind study.Last spring, Taylor experienced the first of three scheduled visits to Denver Children's Medical Hospital with her mother, Carri Pratt by her side. According to Carri, each visit requires a 3 day in house stay jam packed with tests which include an MRI of the heart and kidneys, two 24 hour urine studies, brachial artery ultrasound testing, two separate blood draws for genetic testing, and one dozen blood pressure checks each day. Now that she is on a full regiment of study medications, Taylor experiences biannual blood draws and extensive blood pressure monitoring twice a month consisting of 10 readings where she must sit quietly for 3 minutes between each reading.
Despite being only 10 years old when she volunteered for this study, Taylor was fully aware of everything the study entailed and readily consented to the 3 year commitment of her time and possible risks involved with the testing. She also realized that she represents the fifth generation of Pratt family members to be challenged by Polycystic Kidney Disease, which in includes her father, Clint Pratt. According to her mother Carri, "Taylor understands that without her courage and commitment, other children who are being diagnosed, and those who will be diagnosed in the future, can not benefit from the information researchers will learn without the support of children like her getting involved."
PKD is one the most common genetic life -threatening diseases affecting more than 12.5 million men, women, and children worldwide. There are more people affected by PKD than those with cystic fibrosis, muscular dystrophy, sickle cell anemia, and Down's syndrome combined. It causes cysts to grow throughout the kidneys, grossly enlarging them and ultimately choking out their ability to filter toxins from the bloodstream. Symptoms of PKD include high blood pressure, chronic pain, frequent bouts of infection, kidneys stones, blood in the urine and aneurisms. Approximately 60% of all PKD patients end up in renal failure and require dialysis or transplant to survive. There is presently no known treatment or cure for PKD.
Taylor's desire to help improve the lives of those faced with PKD also motivates her to volunteer her spare time with local PKD awareness projects. Next Sunday afternoon, September 28th, she will be painting children's faces during the annual Memphis Walk For PKD taking place at Shelby Farms. She and her family, the "Pratt Patriot's Team," will also be walking to raise money for education programs and critically needed research to find treatments and a cure. The Memphis Walk For PKD is a family friendly event featuring a picnic lunch, t-shirts, music, warm-up exercise, and a children's activity area including a moon bounce and face painting. Registration opens at noon and the event begins at 1 p.m. Advance registration is $15 and $10 for kids 12 and under, and $20/$15 day of the event. Online registration is available at www.pkdcure.org. For more information about PKD or this event call 901-491-4799.
