Burn victims ask for disability recognition – 08/21/2023 – Equilíbrio

Alexandra Bilar, 44, had an accident with a portable stove in Caieiras, in the São Paulo Metropolitan Region, in 2010. She was admitted to the hospital with burns and underwent initial treatment. But against her hopes of returning home, waiting for the wounds to heal and resuming normal life, she has had 35 surgeries since then.

In place of the wounds, there were sequelae. This year, Alexandra retired from her job as a teacher due to disability, and she still has more surgeries to do. “I heard talk of fire. But what happens to the survivors?”, says Bilar.

Shopkeeper Karina Correia, 42, had 40% of her body burned on February 28, 2021. She was having lunch at her neighbor’s house, in the south zone of São Paulo, when a friend filled the plow pot where they used to barbecue with ethanol. Combustion was immediate.

She celebrated her 40th birthday at the hospital, where she was hospitalized for 31 days.

Now, every Monday, he undergoes vacuotherapy on his right arm. A hose sucks your scar for 40 minutes to soften it and allow better limb movement. Because of the pain, sometimes Karina feels unwell.

He cannot hold the mouse with his right hand or type on the keyboard due to circulation problems in his arm. If he stays in the same position for a long time, he says he feels tingling.

She does not use public transport because she is afraid that her sick arm will be bumped, in addition to not being able to stand for a long time due to circulation problems in her legs. But if she sits too long, the skin between her thighs gets hot.

According to physician José Adorno, interinstitutional representative of the Brazilian Society of Burns, patients who suffer from large or medium burns can face chronic diseases, neurological diseases (in the case of electric shock), stigmas due to scars and emotional difficulties.

“There is an invisibility of these patients today because they are not accepted in society. Many children who have been burned suffer bullying and have very impaired neuromotor development”, he says.

The consequences last for life, says physician Wellington Menezes, plastic surgeon at the Brazilian Society of Plastic Surgery (SBCP) and advisor to the National Association of Friends and Victims of Burns (Anaviq), founded in 2018 by Alexandra.

According to experts, the skin —which is the largest organ in the body— becomes ill after a burn. It loses its capacity for thermal control, hydration and protection against ultraviolet rays.

Plus, Menezes says, skin grafts (when healthy skin from another part of the body is used to replace burned skin) can take up to two years to heal. During this period, they may or may not heal well. Some increase in size, forming keloids, others become smaller and limit joint movement.

In the latter case, the patient may not be able to have adequate leg, arm and even neck mobility.

The sequels, however, are not just functional. Burn scars create difficulties in social reintegration. “We can’t minimize the appearance of the scar to the point that it seems that it doesn’t exist. The grafted skin has a different tone and appearance. Sometimes the person won’t get a job because of the appearance of the scars”, says Menezes.

Continuing in school, getting hired at a job, using public transport, and enjoying leisure can all be activities that get harder for burn victims.

Alexandra founded Anaviq to share experiences and help new “burned people”, as the group refers to. In November 2020, she created an online petition for the approval of a law that called for the inclusion of people with burn sequelae in the Statute of Persons with Disabilities. The petition at 46,000 signatures.

“It’s a boring subject to be talked about. It seems that we are victimizing ourselves, putting ourselves in a poor place. But it’s not, this is a reality”, says Alexandra. She claims that those who were burned do not have equal conditions in relation to people without scars, which would make them fall under the law.

Bill (PL) 4,558/2019 was approved on Tuesday (15) in the Chamber of Deputies and will be sent to the Senate. The text provides burn victims with a biopsychosocial assessment that determines the severity of sequelae and whether there is a disability.

The PL also guarantees full assistance through the SUS (Unified Health System) in all stages of the recovery process.

About 1 million people suffer burns each year in the country. Of these, around 150,000 are admitted to hospitals for admission, says doctor Adorno, who represents the Brazilian Society of Burns.

Since 2009, he has advocated that patients be considered people with disabilities. “They are people lacking public policies. It is a way of supporting them”, he says.

The WHO (World Health Organization) points out that people living in risky conditions, such as overcrowded environments and extreme poverty, are more vulnerable to burns. On the other hand, says Adorno, these people have to pay for lengthy treatments, which include surgeries, compressive garments, physiotherapy, psychological support, sunscreen and high-priced moisturizers.

In a public hearing in the Senate that year, he mentioned that burn victims could have the same benefits as people with disabilities, including the right to work and free access, the right to education, health and accessibility, in addition to the right to tax exemptions and financing.