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Published on Feb 21, 2019
JJ was born with an enlarged spleen and liver and it wasn’t until the age of three that he was diagnosed with Acid Sphingomyelinase Deficiency (ASMD), also known as Niemann-Pick disease type B. He describes what it is like to live with ASMD and how the disease has impacted his life and life decisions. He highlights both the physical and emotional challenges that he faces as a result of having a rare disease.