The University Medical Center of Southern Nevada staff at the American Burn Association conference, promoting the Phoenix Society's Journey Forward kit. (Courtesy of the Phoenix Society.)

Ormond Beach resident Amber Wilcox was sent home from the hospital about a week after a glass jar of boiling hot caramel exploded in her arms, running down her right hand and legs and covering 20% of her body in second- and third-degree burns.

Though her skin grafts seemed to be taking well, there was still a lot of healing left to do.

Her life had changed in one terrifying instant. She and her husband needed up to three hours to change her bandages daily, sometimes twice a day, and her home health care team wasn’t very familiar with burn injuries.

She praises the medical care team at her burn center, but after she was discharged, new challenges and questions kept popping up that she didn’t anticipate.

“My husband and I... thought, ‘yes, I get to go home!’” Wilcox said, now over two years healed from the injury. “We didn’t realize what we were getting ourselves into.”

The Phoenix Society for Burn Survivor's Journey Forward kit is full of items chosen through hundreds of interviews with burn survivors. (Courtesy of the Phoenix Society) (Richard E Devon)

In a survey by the Phoenix Society for Burn Survivors — a nonprofit that provides support, advocacy and resources — two-thirds of survivors said they didn’t have the knowledge or resources they needed when they left the hospital.

To solve this problem, the nonprofit is piloting a kit at six U.S. burn centers, including the Warden Burn Center at Orlando Health Orlando Regional Medical Center, where Wilcox was treated. The kit was devised after asking over 300 burn survivors what information and resources they most needed when coming home from the hospital, said Phoenix Society CEO Amy Acton.

Through August, every adult patient discharged from Orlando Health’s burn center will be given information about how to order the free Journey Forward Kit online.

“Today, people are going home sooner. People are living with bigger burns, and they’re transitioning home with more complicated issues,” Acton said. “So the kit is one tool for us to start to bridge that gap between acute care and hospitals.”

Acton said the nonprofit will track how well the kit prevents isolation and readmissions to the hospital before a planned national rollout.

This bundle contains lotions and other care products, such as a package-opening tool for those limited in motion, and a drinking glass with a silicone straw for those whose new scars limit their range of facial expressions, said Anthony Gielow, associate burn director of the Warden Burn Center.

“Those are a lot of things that most people don’t think of when they think of burns,” Gielow said. “All these small things that they once took for granted are now a little bit more tedious or time-consuming.”

Most importantly, the kit contains contact information for local and national resources and support groups, reminding people they aren’t alone, said Wilcox.

Wilcox found the Phoenix Society two weeks into her recovery after a frantic 3 a.m. Google search for solutions to uncontrollable itching, which is common as burns heal.

“My husband was given a bunch of information [from the hospital]. It probably, may have included itch [solutions] but at the time we were both so overwhelmed,” she said. “There needs to be a constant resource, even after your medical team has kind of let you go from the hospital.”

She now works at the Phoenix Society.

“Somebody who’s been through it, they’re stressed, they’re really just not sure of what’s going to happen. There’s a lot of questions,” Wilcox said. “For other survivors, it’s important, being able to tell them that there is not only hope ... but I think letting them know that there is a community out there.”

Amber Wilcox, burned in a kitchen accident in April 2020, is currently the marketing lead for Phoenix Society.

Perhaps the longest-lasting struggle of being a burn survivor is the stigmatization the group faces — particularly those who were burned or scarred on their faces — Acton and Wilcox noted.

A 2013 study by researchers at the University of East London found job applications from people with facial disfigurement or people in wheelchairs were rejected more commonly than people without those challenges. Media representations of burn victims include Darth Vader from “Star Wars,” Two Face from the “Batman” comics, and Freddy Krueger from “Nightmare on Elm Street.”

“Those with a difference or disfigurement are often viewed as less than, evil, in our media. We are a beauty culture,” Acton said.

This is yet another reason why support from peers is so important, along with efforts to educate others about how to treat someone with burns, Wilcox said. The Phoenix Society is one of the founding members of Face Equality International, an effort that advocates for disfigurement to be recognized as a human rights issue.

“Our goal is to help the community understand that just because we look different doesn’t necessarily mean that we are less than anyone else,” Wilcox said.

ccatherman@orlandosentinel.com; @CECatherman Twitter