International Niemann–Pick Disease Alliance

JJ’s Story: Living with ASMD

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. In the following video he describes what it is like to live with ASMD and how the disease has impacted his life and life decisions, he also highlights both the physical and emotional challenges that he faces as a result of having a rare disease:

Provided courtesy of Sanofi Genzyme, to learn more please visit:

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