At 30 years old, I’ve livedIMG_5820 with short bowel syndrome (SBS), a rare intestinal disorder, for my entire life. When it comes to this disease, I’m an expert by experience. SBS is the result of a congenital defect or trauma and affects about 15,000 to 30,000 people in the US. It is a condition that reshapes the way you live. There are multiple things you become accountable for, including self-managing your condition, keeping on top of medications and frequent visits to the doctor. SBS patients face frequent diagnostic procedures or surgeries, or both. Dietary management is one of the biggest challenges; patients have to make major changes to their dietary needs to help supplement what they do not get through oral feedings — often through TPN and enteral feedings. Being around medicine my whole life was a driving factor to become a full-time patient advocate and support resource for other patients like myself.

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