Sumair Zubary’s Fight Against MPS I and the Life-Changing Impact of ERT

In this video, Samair Zbari, a 32-year-old living with MPS I (Hurler syndrome), shares his personal story. He explains how, from a young age, he struggled with symptoms like limited mobility and stunted growth. Despite being diagnosed with MPS, it took years to determine the specific type of the disorder. In his late teens, Samair began experiencing severe pain in his legs and hands, leading to sleepless nights. After 14 years, he was correctly diagnosed and began enzyme replacement therapy (ERT) in 2011 through the Sanofi Genzyme NCAP program. ERT has been life-changing for Samair, eliminating the pain that once plagued him and significantly improving his ability to perform as a musician. Samair attributes his survival and improved quality of life to ERT, as people with MPS I often do not live long without treatment.