Copy of Burn Survivors Around the World Help to Guide Ground-Breaking Research

• 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 the blink of an eye, sudden, catastrophic, and excruciating. 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 burned people truly need for full recovery is far more complex than basic survival.

This month, ground-breaking research was published in the Lancet Global Health with the largest survey ever conducted of people affected by burns (survivors, family members, and burn-care professionals) from 88 countries, across six continents. The survey asked, “What are the questions future burns research should address?” This global prioritization project was conducted by the University of Bristol, in partnership with the James Lind Alliance. But the heart of this work is the hundreds of burn survivors who shared their stories and their hopes for the future.

Burn surgeons and nurses focus their attention on saving lives and improving physical functioning. However, physical recovery is only one aspect of healing from burns. Any burn survivor will tell you that the true journey of being burned is lifelong, encompassing many issues little understood by the general population.

Meet six survivors who opened their hearts on their arduous and all-encompassing path to burn recovery. They represent people who were burned as children and as adults, recently and 50 years ago, from every corner of the world. One of those survivors is this author, who both participated in the research, and served on the steering committee for the research itself.

Psychological Recovery:

Psychological recovery was the most challenging aspect of being burned for most of the survivors. One might assume that medical recovery, being arduous 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

Adeola Olusola burned age 4 in Nigeria, said being burned “emotionally destabilized” her “throughout [her] growing age.” Adeola had a vision that she could achieve greatness through education. On the other hand, she felt that “no one can love [me].” Even 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 finally breaking free and creating a loving family of her own.

Sue Smith

Sue Smith, burned age 3 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

Barbara Urratia Badilla, from Chile, was burned as an adult. She initially rejected psychological care, stating that “everything [was] ok.” 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 that she was lucky to have access to mental health treatment. In Chile, only those people able to pay for private medical insurance would be able to have such prolonged and life-changing care.

Ian Easton

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 that his hand burns meant that would never play guitar again. He also knew his singing voice was forever altered. Ian benefited from three years of treatment with a clinical psychologist, which was covered by the National Health Service.

Diana Tenney-Laperriere

The psychological impact of burns is not all negative. American Diana Tenney-Laperriere, profoundly burned on 94% of her body, stated that being burned “made me much stronger.” She experienced tremendous periods of frustration and continues to deal with on-going serious health concerns. However, she says she now “handle[s} adversity much better” and that the experience of being burned gave her “much better coping skills.”

Pain:

Burns are widely recognized as being the most painful medical condition. Ian Easton, a British musician burned at age 35, said the pain was “indescribable, really.” Despite in the excellent British health care system and heavy medication, he remembers being “in agony.”

Mr. Easton’s experience, horrific 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 Olusola was burned in Nigeria in 1984, at four years old. She remembers waking up during her first surgery because the pain overwhelmed the anesthesia. “So painful!” she exclaimed.

When this author was burned, over 50 years ago, burned 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. Now, in the US, dressing changes are often done under sedation and heavy pain medication, greatly reducing the pain. However, there are many countries in the world that do not have access to these medications, leaving burned patients in unbearable, agonizing pain.

Social Stigma:

Burned people face rejection for their visible difference around the world. Barbara Urrutia Badilla said that “In Chile, people judge you in terms of appearance.” Barbara notes that it would have been easier in some ways to hide her scars and to 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, notes that this took great strength and courage.

Adeola Olusola raised in Nigeria, experienced “a lot” of stigma. When she was first burned, her parents brought her to a traditional healer. The belief in her culture is that 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. In addition to these complications, Adeola 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 issues. Some burned people develop social anxiety about being seen in public. Many people do 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:

The ground-breaking project has identified the top 10 research questions for burn care, seeking to guide improvements for burn patients going forward. The survivors whom I interviewed have their own hopes for future research, mainly revolving on the wish to be viewed positively in society.

In Nigeria, Adeola Olusola hopes that “society will begin to have a different picture about being a burn survivor.” Adeola 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, his scarred face so scared his students that he was asked to resign.

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

Ian Easton, in the United Kingdom, says “you are not the sum of your injuries.” He chafes at being considered “just” the burn survivor and says that there is so much more to burned people than the scars on which people focus. He now volunteers to help other survivors, and says that burned people are "exceptionally strong, empathic, and creative people... we are people who have lives and meaning.”

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.