BBB 22: People with vitiligo say that Natália’s presence helped to debate prejudice

BBC News Brazil

Any word. Just looks of judgment, disgust, repulsion, denial and pity.

“This is the most painful thing for anyone with vitiligo,” said Maika Celi, 43, an activist and mentor of Brazil’s first vitiligo awareness law. She told BBC News Brazil that most reports from those who seek her are about the rejection of other people because of the disease.

In response to this silent judgment, those who discover they have vitiligo often wear makeup, long pants, a long-sleeved shirt, and gloves. Regardless of the temperature or environment they are in, in a continuous attempt to hide their own body.

The debate about the autoimmune disease that causes skin depigmentation has grown in recent weeks, due to the presence of model and nail designer, Natália Deodato, at Big Brother Brasil. With vitiligo on much of her body, she ignited a debate on the subject and became the target of abuse.

On social media, jokes about the disease emerged, but at the same time an army emerged to defend people with vitiligo. According to the Brazilian Society of Dermatology, official data indicate that vitiligo affects about 1% of the world population and approximately 1 million people in Brazil.

Specialists consulted by the report said that, in addition to not being transmissible, vitiligo reduces the chance of a person having skin cancer. The main counterpoint is to make the area without melanin cells, attacked by the body itself, more sensitive to the sun.

After a co-worker made a joke on social media about Maika Celi’s vitiligo in 2016, the activist said she felt very hurt, but used Facebook to vent and respond to the aggression.

“A greater force came and a feeling that no one would humiliate me anymore because of vitiligo. Until then, I always put myself as a victim, but I changed to the protagonist. I didn’t imagine that the publication would reach so many people. That’s when I started the project ‘My place in the sun’, with a page to share my experiences and those of others with vitiligo”, he says.

The reach of publications grew suddenly. Maika was called to give an interview on TV and, in a short time, she began to receive messages from people saying they had been inspired to accept and stop feeling ashamed for having the disease.

“I even received a message from a woman with vitiligo who had never worn shorts around her son. She wore a skirt, as a gesture to present her son on his birthday, after reading my statements. That was liberating. said: ‘Maika, please, I beg you, don’t stop’, he said.

The activist said that she works to make the process of accepting other people in relation to the disease “lighter” and so that they do not go through moments of deep sadness due to the lack of information and awareness.

She says she was very upset with comments and “judgmental looks” because of her vitiligo. But today she says the main reason for her well-being is to be sure of herself.

“A person must understand that, when they are okay with their imperfections, no one has the power to unbalance or humiliate them. It is a work of self-confidence and self-knowledge that brings this security and does not allow them to be shaken by any concept” , he said.

She sees herself as a reference for people who discover the disease and do not know how to deal with prejudice, are looking for information or just want to hear from someone with more experience.

“It’s not being arrogant, but a lot of people come to me. A follower said she walked into a restaurant and a person was looking at her spots. She thought, ‘What would Maika do? ‘, told me”.

APPEARANCE OF STAINS

In an interview with BBC News Brasil, dermatologist specialist in vitiligo, Paulo Luzio, said that it is necessary to have genetics to develop the disease, combined with great stress.

“A person can have genetics and spend their entire lives without the disease manifesting itself. For them to become active, an environmental factor is necessary: ​​stress. It is a disease 100% linked to the emotional and, in most cases, you have a clear history of what triggered it,” he said.

In Maika’s case, the disease was triggered after a motorcycle accident she suffered at the age of 22. After injuring some parts of her body, she noticed that the wounds did not seem to return to their previous color and other spots appeared.

After reaching out to specialists, Maika said she was given the diagnosis in a derogatory way by a doctor. “Wow, what a shame, you have vitiligo,” says the activist.

Maika also says that she did not accept her skin as soon as she discovered the disease. She avoided going to places where she could expose her skin, such as the beach, parks and barbecues.

“When it appeared on my face, I put on too much makeup. I only wore pants and a long-sleeved blouse, even in the 40ºC heat. People asked if I was okay and I said yes, but inside I was roasting”, he recalled.

Model Roger Monte, 38, said he has had vitiligo since he was 23, when the disease manifested itself from a hole in his chin and worsened due to stress caused by the end of a relationship. But it was only at age 35 that he began to accept the changes in his body and, little by little, he began to be sought after to be photographed.

“Until then, I didn’t go to the beach because I was afraid the makeup I put on would melt and people would see my skin. I spent more than 10 years hiding, getting big tattoos just to hide spots on my body. Today, the more I show , the better”, he said in an interview with BBC News Brasil.

Both Maika Celi and Roger Monte cited Winnie Harlow, a Canadian model with vitiligo, as a reference for a person with self-confidence and self-acceptance. Breaking paradigms, the model has become a figure known worldwide and has already accumulated 9.3 million followers on Instagram.

“In Brazil, I never had a reference like that, so I want to be the reference and the help that I didn’t have”, said the model Roger Monte.

“As I usually say, things changed when I started to change the way I looked at myself. The judgment of people and the way they walked away from me hurt me and I took it to heart. Once, a gentleman in subway station told me that his brother took armadillo blood to cure the disease. In another situation, a woman on the bus said I had to treat it because vitiligo could kill me. After she got off, I felt everyone looking at me and I kept my head down. That never left my memory. Today, as I think my skin is beautiful, when I feel someone looking at me like that or wanting to give me recipes, I just ignore it”, said Roger Monte.

VISIBILITY ON BBB

Those interviewed by the BBC report said that the presence of Natália Deodato on Big Brother stimulates the debate on vitiligo and breaks paradigms on the subject. Maika said that this presence inaugurates a new phase in the history of vitiligo in Brazil.

“Her choice was yet another paradigm shift with regard to standards in our society. When I went to the supermarket, the cashier told me: did you see that at the BBB there is a person just like you? That was a victory for me” , he said.

For her, the visibility and stimulation of the debate caused by Natália’s presence at BBB will be essential to help, mainly, to debunk old myths, such as that vitiligo is contagious.

On the other hand, dermatologist Paulo Luzio says that it is also important to clarify that Natalia’s statement that vitiligo can “evolve” into albinism is incorrect.

“They are different genetics and diseases. In albinism, you have pigment cells in normal numbers, but they don’t work, in a simplified way. In vitiligo, there are cells, but they die by the immune system. When it reaches more than 70% of the body, it’s called universal vitiligo, but it’s not albinism,” he said.

The doctor, a member of the Global Vitiligo Foundation and who, for 16 years, has treated only cases of the disease, also said that albinism increases the chance of a patient having skin cancer, while vitiligo decreases.

“Vitiligo has the P53 protein, which corrects DNA damage and decreases the chance of having cancer. On the other hand, vitiligo spots burn more easily and can blister, which requires the skin to always have sunscreen on. “, he stated.

The specialist also explains that having the genetics of vitiligo does not mean that it will manifest itself in the patient. According to him, the fact that someone in the family has vitiligo increases the chances by around 30%.

The doctor says that some laser treatments, constant use of sunscreen and other creams help to reduce the spots caused by vitiligo, but that the disease does not cause any health problems.

“Treatment is an option, but self-acceptance is the most important thing. We have to accept ourselves as we are. About 20% of patients complain of itching at the spot of the spot, especially when they are appearing. not to burn in the sun”, he said.

Among the myths and sympathies used to try to cure vitiligo, the doctor said he had already heard dozens of different reports. Among them is the use of teas and products of animal origin, such as taking blood from armadillos and raw tortoises.

“I attended to a patient who was a child and who took, instructed by those responsible, a glass of raw beef liver mixed with cashew for years. Their belief was that this would reduce the stains”, said the doctor.

He said that medicine has advanced and today there are several treatments and medications available for those who want to reduce blemishes. There are remedies for oral, topical, phototherapy, injections and even melanocyte transplantation.

For activist Maika Celi, there are four main pillars that must be considered by those who have vitiligo: acceptance, self-love, awareness and allowing yourself.

“I raise this as the main subject. I always say how many opportunities I missed for not allowing myself. If Natália is in the BBB, it’s because she allowed herself. There’s still another factor as a black woman. Imagine the taboo she had to break”.

According to dermatologist Paulo Luzio, one of the limitations for the treatment of vitiligo is having few qualified professionals to evaluate and treat it. He mentions that Americans are strong in conducting research, but have few patients to treat.

In American congresses that promote meetings with specialists in dermatology, he told the report, only about 30 people dedicated to vitiligo attend and, generally, they are always the same.

“Today, in dermatology books with 3,500 pages, for example, only 3 pages are dedicated to vitiligo, and they don’t talk about anything. It’s disappointing. It’s as if it were less important”, says the dermatologist.

VITILIGO AWARENESS LAW

In 2018, Maika Celi contacted the City Council of Piracicaba, the city where she lives in the interior of São Paulo, to report that she was missing a municipal law dealing with vitiligo.

“They found it interesting and, in 2019, the Municipal Vitiligo Awareness Law was created, always remembered on June 25, the World Vitiligo Awareness Day. After this initiative, other municipalities felt the need to take this idea and already similar laws were passed in Saltinho and Santa Bárbara d’Oeste”, he said.

She said that the passing of the law helps to promote events, conversation circles, lectures and photo exhibitions in public areas and schools, for example. Now, Maika’s intention is to pressure public bodies so that sunscreen is provided by the public health system to people with vitiligo.