What started as a routine care visit for a swollen lymph node quickly cascaded into an unknown, multi-system disease that wreaked havoc on Benjamin’s body, leaving him often bedridden and in daily pain. After years of being misdiagnosed and shuffled from specialist to specialist with no answers, we traveled to Utah for a second opinion.

The Utah team of doctors formally diagnosed Ben with Mast Cell Activation Syndrome (MCAS), Hereditary Angioedema (HAE), Primary Immunodeficiency Disease (PID), and a gain-of-function gene mutation called SCN11A Paroxysmal Pain Syndrome.

Ben is currently undergoing several forms of treatment for his diseases, which include bi-weekly trips to LA for Intravenous Immunoglobulin (IVIG), prescription medications to control pain and swelling, and frequent trips to Utah to see his immunologist. Ben is unable to attend in person school at this time; however, his family hopes that as his treatments progress, he will be able to ease back into school and social activities.