Patient Perspective on Short Bowel Syndrome (SBS)

Presented by Swapna Kakani

Swapna Kakani
Presentation Overview

In her presentation, Swapna shares parts of her 30 plus year journey with Short Bowel Syndrome and the key aspects she has learned to help her continue to move forward with a GI chronic disease. Swapna describes the mindsets she and her family had to have to live with Short Bowel Syndrome since birth, including adapting to a new normal and appreciating each day alive and healthy fighting for small and big milestones. Through the many ups and downs, and severe complications, Swapna has learned the importance of finding the right care, at the right place, at the right time, and what she cannot sacrifice in her daily care and thinking in order to live for tomorrow.

About Swapna Kakani

Swapna Kakani is a sought-after professional speaker in the area of overcoming personal adversity, and an advocate in the area of healthcare delivery and the patient experience. Her inspirational life story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact her healthcare advocacy has across disciplines. Swapna was diagnosed with Short Bowel Syndrome at birth due to atresia and has lived with supplemental intravenous nutrition for 28 years and counting and a feeding tube for 24 years. In 2014, she had a small intestine organ transplant. Swapna through her platform, Swapna Speaks, has given several presentations across the world to various healthcare companies and associations, hospitals, and non-profit events, including the Cleveland Clinic/HIMSS Patient Experience Summit, and a TEDx talk in 2017. Swapna, does healthcare advocacy work both at the federal and state level for the Short Bowel Syndrome/Intestinal Failure and broader rare disease community. She has been part of various projects to improve care and maintenance for IV and enteral nutrition consumers and part of policy and regulation changes to improve the rare disease patient experience and increase the patient voice. In 2017, she founded Alabama Rare, a grassroots coalition to unite the state around the rare disease population. It acts to bring support for individuals & families, educate the broader community, bring awareness to the population’s needs, and advocate for necessary change. Swapna on behalf of Alabama Rare, was instrumental in passing the state law to create the Alabama Rare Disease Advisory Council and starting an annual statewide multi-stakeholder patient/family rare disease symposium. She now is the EveryLife Foundation RDLA State Advocacy Fellow creating and growing their state advocacy program. 

In March 2019, Swapna was awarded the consumer advocacy award by the American Society for Parenteral and Enteral Nutrition, and in July 2019, was nominated by Wego Health as a patient leader hero. In August 2020, she was awarded the Innovator/Advocator Award by the Oley Foundation. In January 2021 she joined the Association for Vascular Access as a board member. You can follow Swapna on Facebook, Twitter, and Instagram @SwapnaSpeaks.

Swapna is originally from Huntsville, AL, received her bachelors in Psychology and Master’s in Public Health from the University of Alabama at Birmingham (UAB). 

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