14 February 2017

Ashley's Story

AshleyAshley Zavela is originally from Brazil, Indiana. She was diagnosed with Familial Partial Lipodystrophy (FPLD) in 2006 while living in Knoxville, Tennessee after some of her lab results revealed high triglyceride and insulin levels. In 2007 she had a bout of congestive heart failure. Her symptoms of FPLD and heart failure were well controlled with medications until September 2011 when, after a routine surgery, it was discovered her heart was failing fast and was beginning to cause liver issues. In November 2011 she went to Indiana University Methodist Hospital where it was determined that a heart transplant would be needed. After moving into the hospital, Ashley received her gift of life on April 12, 2012. She was released 12 days later and, after completing cardiac rehab, moved back to her current home in Mt. Zion, Illinois. She resides there with her husband, Allen, daughter, Emerson, and 3 pugs. In addition to being the Secretary and Co-Founder of LU, Ashley is an active volunteer for the Indiana Organ Procurement Organization, a member of Mothers of Preschoolers (MOPS), and a budding soccer and dance mom.

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Help others learn about Lipodystrophy by sharing your story. Your personal journey will help inspire and connect other Lipodystrophy patients and inform rare disease stakeholders and the public about this rare disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.