From the video: a youth whose father died of PKD points to another potential patient, his sister.
This video was made out of a mother’s desperation and the dedication of people who understand the importance of finding a cure for Autosomal Dominant Polycystic Kidney Disease (ADPKD). A woman whose husband is on dialysis after a failed kidney transplant due to ADPKD and whose daughter was just diagnosed with this disease found a volunteer videographer, Ms. Sandra Beltrao, and our NYU ADPKD physician-scientists, Drs. Irina Barash and Edward Skolnik, to help raise awareness about this disease and impart the urgent need for research support to find a cure.
ADPKD is the most common, life-threatening single-gene disease. It affects 1 in 750 individuals, over 500,000 people in the United States and 12 million worldwide. This disease is the fourth leading cause of kidney failure in the US. ADPKD does not discriminate based on gender, race, ethnicity or geography. People with a family history of ADPKD and younger people who develop high blood pressure may be diagnosed with ADPKD. In ADPKD, kidneys enlarge with age because they contain many cysts, or fluid-filled sacs. Over years, these cysts grow in size and in number and lead to kidney failure in about half of ADPKD patients. The cyst growth and disease progression is relentless.
Drs. Irina Barash and Edward Skolnik at the NYU Langone Medical Center are dedicated to provide the highest level of care to ADPKD patients, as well as conduct research toward a cure for ADPKD. Dr. Skolnik is investigating a potassium channel important in ADPKD cyst enlargement, for which a blocker drug is available, while Dr. Barash is carrying out a clinical study to evaluate the effects of water loading on cyst growth. ADPKD researchers are getting ever closer to finding a treatment and are very hopeful to produce new effective drug therapies in the next 3 years. Financial support and participation in clinical trials is needed to further this objective.
Ms. Beltrao filmed real people affected by this disease who walk in support of research to find a cure at the TriState PKD Walk every October in New York, organized by the PKD Foundation, and the physician-scientists whom they motivate to work towards the same goal.