United for Change: Burn Survivors Around the World Help to Guide Groundbreaking Research

Phoenix Society’s involvement in this project is a continuation of our international advocacy—from shaping global research to partnering with organizations like Face Equality International to challenge social stigma. Through initiatives like Phoenix World Burn Congress and World Burns Week, Phoenix Society continues to unite survivors, professionals, and partners across borders to transform recovery and redefine what’s possible for burn survivors worldwide.

• An Australian toddler dries her doll’s hair near an open fire and tumbles in.

• A Chilean graphic designer works in her apartment, which explodes from faulty wiring.

• An American saleswoman tidies her yard using a small fire, but the flames envelop her.

• A British musician repairs his guitar and turns on the radiator, which explodes.

• A Nigerian four-year-old looks for her toothbrush with a handheld lamp and sets her nightgown ablaze.

• An American four-year old stands near a charcoal grill as her mother lights it, but the lighter explodes.

Burn injuries happen in an instant—sudden, catastrophic, and life-altering. 11 million people are burned every year, endangering adults and children in every country of the world. Medical treatment of burns has advanced through the decades, particularly in countries with higher economic resources. However, what burn survivors truly need for full recovery is far more complex than basic survival.

In a landmark global effort, burn survivors, family members, and burn-care professionals from 88 countries came together to shape the future of burn recovery. Their stories formed the heart of a new research study published in The Lancet Global Health, the largest-ever survey of people impacted by burns. The survey asked, “What are the questions future burns research should address?” The project, led by the University of Bristol in partnership with the James Lind Alliance, was not just about gathering data. It was about listening.

Phoenix Society for Burn Survivors was proud to help recruit participants and serve on the study’s international steering committee, ensuring survivors’ lived experiences and priorities shaped the path forward. I had the honor of participating both as a contributor and as a member of that committee.

This global research identified the top 10 priorities for burn care and recovery—but just as importantly, it highlighted the real lives behind the statistics. Burn surgeons and nurses focus their attention on saving lives and improving physical functioning, but physical recovery is only one aspect of healing from burns. Any burn survivor will tell you the true journey of being burned is lifelong, encompassing many issues little understood by the general population.

In this article, you’ll meet six survivors (including myself) who generously shared their journeys to healing. They represent people who were burned as children and as adults, recently and 50 years ago, from every corner of the world. Their insights guide us toward a more compassionate and comprehensive model of recovery.

Psychological Recovery

For most survivors, psychological recovery and emotional healing proved more difficult than physical treatment. One might assume medical recovery, being strenuous and painful, would be the worst part of surviving a burn. But physical recovery is finite and eventually ends. Psychological adjustment to looking different, losing abilities, trauma, self-consciousness…these challenges can be lifelong.

Adeola Olusola, burned age four in Nigeria, said being burned “emotionally destabilized” her “throughout [her] growing age.” Adeola had a vision she could achieve greatness through education. On the other hand, she felt “no one can love [me].” Though she was academically gifted, Adeola’s poor self-image left her vulnerable. She struggled for years with an emotionally and physically abusive man before breaking free and creating a loving family of her own.

Sue Smith, burned age three in Australia, remembers feeling isolated, knowing no other burned children. She had poor confidence and was extremely self-conscious, only wanting to be around “safe people.” She described “not understanding me” and “being fearful at times and not knowing why.”

Barbara Urratia Badilla, from Chile, was burned as an adult. She initially rejected psychological care, stating “everything [was] okay.” However, upon hospital discharge, she “found [herself] trapped in a storm… didn’t know [herself]… didn’t recognize [herself].” Eventually, Barbara entered psychological treatment for 2 ½ years, which she described as life-changing. Barbara noted she was lucky to have access to mental health treatment. In Chile, only those able to pay for private medical insurance would be able to have such prolonged and life-changing care.

Ian Easton, a successful British singer-songwriter-guitarist, said his burns caused an “exponential amount of shock and trauma.” He suffered extensive inhalation burns and burns to his hands. He worried he would never play guitar again, and he knew his singing voice was forever altered. Ian benefited from three years of treatment with a clinical psychologist, covered by the National Health Service.

The psychological impact of burns is not all negative.

Diana Tenney-Laperriere, an American profoundly burned on 94% of her body, stated being burned “made me much stronger.” She experienced tremendous periods of frustration and continues to deal with serious ongoing health concerns. However, she says she now “handle[s] adversity much better” and the experience of being burned gave her “much better coping skills.”

Pain

Burns are widely recognized as being the most painful medical condition. Ian said the pain was “indescribable.” Despite being treated in the British health care system and receiving heavy medication, he remembers being “in agony.”

Ian’s experience, painful as it was, represents the experience of being burned in a high economic status nation, with excellent health care and modern standards of pain medication. Adeola’s experience was much different. She remembers waking up during her first surgery because the pain overwhelmed the anesthesia.

When I was burned over 50 years ago, children were not given pain relief during dressing changes. The twice-daily changes were excruciating experiences, involving the removal of caked-on dressings over open wounds. In the US, dressing changes are now often done under sedation and heavy pain medication, greatly reducing the pain. However, many countries in the world do not have access to these medications, leaving burned patients in agonizing pain.

Social Stigma

Burn survivors often face rejection for their visible difference around the world. Barbara said, “In Chile, people judge you in terms of appearance.” Barbara notes it would have been easier in some ways to hide her scars and stay at home. Instead, she returned to work in bandages, modeling strength, courage, and self-acceptance to others. She is proud of her ability to hold herself with pride, noting this took great strength and courage.

Adeola experienced “a lot” of stigma. When she was first burned, her parents brought her to a traditional healer. Her culture believes when you are burned by fire, “spirits cause it… maybe the devil.” Traditional healers use herbs to “call the spirits out.” Unfortunately, these traditional healing methods caused many complications for Adeola’s healing. Adeola also remembers being taunted by other children, who made up names about her and shunned her.

Stigma against looking different can lead to childhood bullying, difficulties with dating, job discrimination, and a host of other issues. Some survivors develop social anxiety about being seen in public, though many people learn to overcome their anxiety. The survivors in this project all found love and meaningful work, despite the prejudice they faced.

Hopes of the Burn Community

What united everyone in this research was hope—not just for themselves, but for those who come next. Survivors want to see the world every survivor deserves: where they are seen, supported, and surrounded by a caring community.

Adeola hopes “society will begin to have a different picture about being a burn survivor.” She stated, “being burned doesn’t make you a scary person.” However, in Nigeria, prejudice against people who are burned can be powerful. She shared a story about her burned friend who had studied to be a teacher. Instead, he was asked to resign because his scarred face so frightened his students.

Sue hopes the study will bring awareness to the general public of what it’s like to be burned and to look different. She thinks the key to being a strong burn survivor is access to holistic treatment, “body, soul, and spirit.”

Ian says, “You are not the sum of your injuries.” He gets frustrated at being considered “just” a burn survivor and says there is so much more to burned people than the scars. He now volunteers to help other survivors and says burned people are "exceptionally strong, empathic, and creative people... we are people who have lives and meaning.”

How You Can Take Action

Phoenix Society for Burn Survivors invites you to help support this research and survivors around the world during World Burn Week. As an international leader in survivor advocacy, Phoenix Society works to amplify survivor voices, challenge outdated perceptions, and drive lasting, equitable change in burn care and recovery. Together, we can shape a more inclusive future for survivors around the world. Learn more and get involved by following Phoenix Society on Facebook and registering for World Burns Week.

Disclaimer: The stories featured on this website are personal accounts shared by individuals from the burn community. Each burn injury, recovery journey, and healing process is unique. These stories are meant to offer connection, insight, and hope but are not intended as medical advice. What worked for one person may not be appropriate for others. The perspectives shared in these stories do not necessarily represent the views of Phoenix Society for Burn Survivors. If you have medical questions or concerns, please consult a qualified healthcare professional.