Dear CRIBBS participant,
A central role of the Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS) is to promote improved health for individuals with BBS. This email is provided not to conflict with your health care providers but rather to bring to light information that may help you in your discussions with your health care providers. In the CRIBBS database more than 5% of participants report taking a medication called a proton pump inhibitor (PPI). PPIs include the following medication: omeprazole (Prilosec®), pantoprazole (Protonix®), esomeprazole (Nexium®), rabeprazole (Aciphex®) and lansoprazole (Prevacid®). PPIs were originally designed for short term use, perhaps a few weeks. Unfortunately the PPIs are used by many individuals for months and sometimes years. Recent publications discuss the increased risk of kidney disease, worsening kidney function and End-Stage Renal Disease (ESRD) in individuals taking PPIs on a long-term basis. It is my opinion that essentially all individuals with BBS are inherently at risk for chronic kidney disease and based on CRIBBS information about 10% of individuals with BBS develop ESRD. Therefore, it is reasonable to limit and when possible avoid medications that may harm the kidneys. I recognize that the health care for individuals with BBS is often complex and again this email is not intended to conflict with your health care providers however it is prudent to discuss this information with your provider.
Thank you as always for your participation in CRIBBS. It is your efforts that make dissemination of health information possible. If you currently are not participating in CRIBBS I invite you to consider enrollment. Learn more about CRIBBS at www.bbs-registry.org or call us at 877-594-3499.
Bob Haws, M.D.
Pediatric Nephrologist
Director, CRIBBS
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