By Chris Bavender
As a child, Emma Tillman was diagnosed with cyclic vomiting syndrome.
It progressed, and in 2011 she learned that her gastrointestinal system had stopped working normally, leaving her without the nutrition she needed. For the past five years, the Carmel resident has received the majority of her nutrients through an IV line in her chest, called total parenteral nutrition.
“This line can be used for several years,” Tillman said. “Each day, I infuse one bag using a small pump that I can carry in a backpack. I wear this backpack to work and infuse my nutrition while doing my daily activities.”
A clinical pharmacy specialist in the pediatric intensive care unit at Riley Hospital for Children, the 36-year-old started wondering what information a patient or parent of a child new to TPN would find online.
“I was greatly disappointed that all of the images that I found tagged were ‘sick’ pictures. For example, a woman in the hospital bed with TPN, a boy laying on a couch looking sick, etc.,” Tillman said. “I decided I was going to try to flood social media with pictures of me doing normal things. I work full time. I run, travel, spend time with friends and do not dwell on my illness.”
Now, anytime she posts a picture on social media, Tillman tags it with #tpnstrong to show those new to TPN they can live a full life and thrive. As part of Home Parenteral Nutrition Awareness Week Aug.13-17, she and others with TPN are sharing their stories.
“I want people to realize that you can live a full life even with medical or nutritional challenges. I have had several obstacles to overcome in my life,” she said. “I hope by sharing my story I can encourage others that may still be in a bad/hopeless place with his or her illness they can get through it and thrive again.”
For more, visit the Oley Foundation www.oley.org. The organization assists in education and advocacy for people needing home parenteral nutrition. Tillman also encourages anyone with questions to email her at [email protected] or follow her on Instagram, @et_runhome.
