United Kingdom
Alport Story: From Personal Isolation to International Collaboration for Kidney Care – WCN22-1320
Submitted by: Clarke, Sam
Country: United Kingdom
Alport Syndrome (AS) is an inherited condition that can cause kidney failure, deafness and eye abnormalities. Around 1 in 10,000 people are affected; potentially 750,000 people world-wide, although recent research indicates the numbers may be higher. AS particularly affects young people at an age when they are most vulnerable; typically starting with hearing loss in childhood, followed by declining kidney function in teenage years. Many patients will need a kidney transplant or dialysis as young adults. Often more than one member of a family is affected, with no apparent ethnic, or geographical prevalence. Alport research shows early diagnosis and intervention can affect prognosis by delaying end stage kidney disease also relevant for ‘carriers’/women with AS who can develop high blood pressure and impaired kidney function later in life.