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Physician, family and teen tell Michigan committee about impacts of rare kidney disease FSGS
Summary
A pediatric nephrologist, a mother and her teenage son described how focal segmental glomerulosclerosis (FSGS) affects patients and families, urged earlier screening, telehealth access and regulatory pathways for treatments.
Dr. Zubin Modi, a pediatric nephrologist and researcher at the University of Michigan, told the Health Policy Committee that focal segmental glomerulosclerosis, or FSGS, is a rare kidney disease that can lead to heavy protein loss, swelling and, in many cases, progression to end-stage kidney disease requiring dialysis or transplant. "There are currently no FDA approved therapies for this disease," Modi said.
The committee heard personal testimony from Sashay Walker, who described her son Aiden’s decade-long fight with recurrent FSGS. "Aiden was diagnosed with FSGS when he was 8 years old," Walker…
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