Huntington Convention Center | Cleveland, OH
A Cleveland Clinic & HIMSS Event. Find out more
Swapna Kakani was diagnosed with Short Bowel Syndrome, a chronic rare disease, at birth and for 27 years has lived with supplemental intravenous nutrition and a feeding tube. She has undergone several surgeries at multiple hospitals throughout the country. In 2012, she made the difficult decision to have her dysfunctional bowel removed and as a result, was not able to eat solid food for almost 3 years. In spite of this, she loved to cook for her family and friends, calling herself a true “foodie,” and has become well versed in nutrition.
In those three years, despite her constant hunger and craving to eat, Swapna went back to college, graduated with top honors, and gave the commencement address. In 2014, Swapna received a small intestine transplant and she is presently doing well eating beloved southern food for the first time! She remains busy advocating for other rare disease patients and maintaining her quality of life as a young adult.
Swapna Kakani was diagnosed with Short Bowel Syndrome, a chronic rare disease, at birth, and for 27 years she has lived with supplemental intravenous nutrition and a feeding tube. In this session, Swapna will share her experiences in both the inpatient and outpatient settings of how shared decision making was not respected. Her goal is to help attendees understand the depth of the problem - how a gap in not understanding a patient's personal preference can lead to larger healthcare problems. Importantly, Swapna will explain what matters most to chronically ill patients. What do healthcare providers do right? What do they do wrong? Where wasn’t she included in the decision-making process that she wanted to be?