Daiane Cruz was born in the city of Jequié, in the interior of Bahia, with a blister on her heel. Over time, the wound grew and appeared in other parts of his body. Frightened, her parents sought medical attention and, following a detailed investigation, discovered that the girl was suffering from a rare skin condition: epidermolysis bullosa.
“No one knew regarding the disease, it was something completely new in the family. At first, my relatives were scared as they didn’t know if it was contagious. But later they found out that it wasn’t”, says Daiane.
Today, at the age of 30, she lives with wounds all over her body, similar to third-degree burns. She cannot go out in the sun, and at bath time, she has to overcome the discomfort caused by the water on her skin. Patients with the disease are popularly called butterflies, as the skin is so fragile that it resembles the insect’s wings.
epidermolysis bullosa
Epidermolysis bullosa is a rare genetic disease that affects children, young people and adults. According to the Brazilian Society of Dermatology, it is characterized by the fragility of the skin and mucosa due to an alteration in the synthesis of proteins that unite the layers of the skin.
In the absence of substances, the layers separate with any friction and, therefore, the areas of folds and extremities, such as feet and hands, are usually more sensitive. The disease has no cure and there is no specific treatment: care is palliative and involves nutritional support, infection control and wound care, in addition to monitoring by professionals.
Illness is not a hindrance
Despite the sensitive skin, patients with epidermolysis bullosa have no restrictions to carry out day-to-day activities, such as attending school and working. Daiane, for example, says that, despite the illness, she never stopped doing what she likes.
She attended school when she was younger and learned to read and write, but did not continue her studies. “I go out and have fun normally when I want to. I’ve been to the beach twice and even bathed in the sea, but always protecting myself from the sun with hats and other accessories, ”she recalls.
Today, she stays at home more with her mother and sister, and follows a whole morning ritual. Every morning for breakfast, she takes medicine that involves supplementation and vitamins: due to the disease, the Bahian woman has difficulty absorbing nutrients from food and, consequently, gaining weight.
Daiane Cruz was diagnosed with epidermolysis bullosa at the age of two Personal archive
Diane 3She was born with the diseasePersonal archive
Diane 4Daiane is 30 years old and is assisted by the NGO Jardim das Borboletas Personal archive
Diane 2Today, she is an influencer and has 192,000 followers on a social network. Personal archive
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Bathing is also part of your daytime routine, but it’s not as simple as that. The process can be extremely painful if she has an inflamed wound. Daiane needs to remove the bandages from her entire body and the bandages — if any gauze is stuck, it is necessary, with care and with the help of a body oil, to separate the band from the skin.
After the bath, she changes all the bandages and bandages herself once more. Usually, the Bahian woman has help from a family member for this activity, since her hands are atrophied due to the disease.
“There’s a part of my body that, when I’m very sensitive, I look at it and cry. But I know that the scars and marks are stories and experiences that I’ve lived, and that’s okay, ”she says.
Skin cancer
Every three months, Daiane the butterfly travels to neighboring cities, such as Vitória da Conquista or Salvador, to carry out her routine tests with a dermatologist and nutritionists. The Bahian also undergoes psychological follow-up to help her overcome all the challenges caused by the disease.
In March 2022, during a routine exam, she discovered skin cancer in one of her lesions. Daiane started treatment, underwent surgery, and improved a lot. But in October of last year, she had a recurrence and the cancer returned. The woman from Bahia is waiting for her extreme anemia to return to normal before undergoing another surgery.
life of influencer
The butterfly says that she always wanted to help people and wondered how she might do that within her limitations. Because she stays indoors a lot, she saw social media as a way to launch herself as an influencer.
She started sharing her day to day on Instagram and started to receive a lot of support and positive comments. “Some people say that my videos help on difficult days, and I saw that I might help,” she explains.
Today, Daiane accumulates 192,000 followers and shares videos not only of her routine and fun facts regarding the disease, but also dances, reflections, looks of the day and even received from partnerships.
In addition, she is assisted by the NGO butterfly garden, founded in March 2017 with the aim of welcoming children and young people with epidermolysis bullosa and other rare skin diseases throughout Brazil. The house provides assistance to people with monthly monitoring by a multidisciplinary team composed of social workers, nurses, pharmacists, psychologists, nutritionists and a lawyer.
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