personal story

Circle of hope: Erin Luciano

Lupus Foundation of America

Resource Content

When Mary and Albert Luciano found out in 2008 that their daughter Erin had lupus, they were determined to learn everything they could about the illness. “We can't help our daughter survive this if we don't know every thing we can about this disease, cure and medications.” The Lucianos also wanted to help raise funds and advocate for lupus awareness. Since Erin’s diagnosis, Team Luciano has been a huge presence at the Walk For Lupus Now in Hartford, Connecticut, and the family was part of the movement that  helped pass Connecticut’s Lupus Education and Awareness Bill in 2011.

Erin, now 18 years old, wants to advocate on a different level, however. A gifted chef, she wants to combine her love of great food, with her desire to provide tastier options for people like herself who are living with lupus or other chronic illnesses, and find themselves on restricted diets. Erin became interested in balancing nutrition with good food when she was put on a low-sodium and low-phosphorous diet while hospitalized, but found little on the menu to choose from.

“They had chicken tenders and stuff, but I was on low salt because my kidneys were shutting down,” she says. “There was nothing really to pick from that was a healthy option that would make sense on that diet. It made me want to find the right things that I can make in order to fit my diet.”

Erin developed her love of the culinary arts early. She grew up spending time in the kitchen with her mother and grandmother. “She has been cooking since she could sit in the high chair on her own.” Mary explains.

Whether she’s working from a recipe, or improvising, Erin’s favorite thing to prepare is Italian food. “Give me pasta,” she says, “and I’ll be happy.”

Erin, who graduated high school this past June, has been accepted into the culinary program at Johnson and Wales University in Providence, RI. She’s excited to train to become a professional chef. “I know I can help others and myself by making healthy food taste good,” she says. “Instead of saying, ‘this is what you can’t have,’ we can say, ‘this is what you can have.’ I’d like to make people feel that they’re not on a restricted diet, because being on a restricted diet makes you want to eat everything you’re not supposed to.”

Unfortunately, Erin has a lot of experience with restricted diets and hospital food: Between January and June of 2012 she spent five months in the hospital, and she is currently undergoing dialysis three days a week. Her family hopes she’ll move onto peritoneal dialysis later this summer, and that soon she’ll be strong enough for a kidney transplant.

Due to her ongoing health issues, Erin has decided to defer Johnson and Wales until fall 2013.

Mary hopes her daughter will go to Rhode Island with a new kidney. She adds, “Erin is confident that she’ll go to Johnson and Wales next year.”

Erin is also confident she’ll be able to turn her love of cooking and her struggle with lupus and diet into a career. Her ultimate goal is to work in a spa or resort where people love good, healthy food. “I want to help myself and others,” she explains, “by making healthy choices with food that tastes good.”