VITILIGO - PhMuseum

VITILIGO

Rosa Mariniello

2017 - Ongoing

VITILIGO

This project consists of a series of environmental portraits of people suffering from vitiligo, a chronic condition characterized by depigmented patches of skin due to the loss of melanocytes, the cells that produce the skin-darkening pigment melanin. Vitiligo affects 1 to 2% of the world’s population, regardless of age, sex or ethnic background. While the exact causes of this condition remain unknown, a number of factors may contribute, including, among others, an autoimmune disorder, a stressful or traumatic event, and heredity. The natural course of the disease is unpredictable. Available treatments range from creams and lotions to phototherapy, to pills. They may help reduce the visibility of vitiligo, but no cure currently exists.

My interest in vitiligo comes from my childhood, as several members of my family in Italy have the condition. Growing up, I realized that, even though vitiligo is not contagious, it could be life altering due to the social stigma attached to it. It thus became important to me to explore, through photography and interviews, the impact of vitiligo on the quality of life of those who suffer from it. So far, I have met and photographed people across five countries: India, China, Denmark, Cuba and – of course – Italy. India, China and Denmark are the three countries with the highest incidence of vitiligo (in the Gujarat region, India, it reaches 9%), while Cuba deserves attention because of a topical human placental extract used to treat patients in Havana, which is claimed to be very effective and costs little more than a candy bar.

VITILIGO inevitably raises questions about beauty and identity. Young people with visible vitiligo are often shunned, shamed, or mocked with nicknames like ‘cow’, ‘clown’ or ‘giraffe’. The resulting emotional effects can be devastating – low self-esteem, anxiety, or even depression. In short, the impact of vitiligo goes way beyond the skin. Sufferers undergo a physical as well as a mental change, because vitiligo can adversely affect a person’s social interaction, romantic relationships, and career . This change is especially challenging in cases where vitiligo spreads rapidly and sufferers have to cope with the loss not only of their pigment, but also of a part of their racial identity. While much progress has been made in terms of the public perception of vitiligo since model Winnie Harlow became world famous, more needs to be done for the majority of people who have the condition, who just want to be cured and live like everybody else.

For these reasons, one of my main aims has been to provide an authentic representation of my subjects, in an effort to give dignity back to human beings who are vulnerable and stigmatized because of their appearance. The portraits of Mercedes, Benjiamin, Yisel, Alejandro, Lu, Ankit Majsuriya, Eva, Miladis, Niels, and all those who let me – and my camera – into their world, challenge the emphasis placed by contemporary society on appearance and aesthetics. I am humbled by the courage and generosity of the people I have photographed for this project. By embracing themselves and their authenticity, they are paving the way for others to do the same. By showing their bodies as they are, they have taken action to raise awareness of vitiligo, with a view to encouraging greater medical and psychological support for sufferers and their families, and in the hope of prompting researchers to identify new therapies that could fill the current gaps in treatment options.

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  • HAVANA, CUBA-2018 March 18. Mercedes, 42 years old, posing in her house.
    The first Vitiligo marks appeared on her elbows and legs by the age of 35, after her grandmother's death.
    Now Vitiligo took over 90% of her body. She used Cuban treatments with good results but in the end she gave up using them because she was fed up of applying the lotion every day.
    Now she puts black makeup on her face in order to camouflage the white skin. If someone asks her: "Mercedes, do you have Vitiligo on your face?", she answers harshly :"NO, I don’t."

  • KAMREJ GAM VILLAGE, GUJARAT, INDIA - 2018 MAY 05: Ankit Maisuriya, 24 yeas old, posing in his parents house.
    The first Vitiligo spots on his hands, popped up when he was 5 after a personal trauma. He’s the only one in his family, so far, with the condition and has never done any treatments.
    The disease made him a very shy and unconfident person.

  • CANTON, CHINA - 2019 MAY 26: LU, posing in my hotel room. He is 34 years old and he had the first Vitiligo spots when he was 12 on the back and on the knees. When he was 24 his skin problen increased quickly on all his body without an apparent reason. He got vitamins and chinise medicine and his melanine was coming back.The work stress is getting worse and worse his Vitiligo . In the last 10 years his mum is suffering of Vitiligo too. She has many marks on her arms and her belly

  • COPENHAGEN, DENMARK- 2018 AUGUST 06: Niels, 46 years old, posing in his house. His first Vitiligo's marks showed up on his hands ,when he was 9; he tried numerous treatments with UVB lamps when he was a little boy without any results. He was the only member of his family suffering of Vitiligo but now some vitiligo spots have appeared on his little daughter's body too.

  • HAVANA, CUBA - 2018 MAY 05: Yisel , 6 yeas old, posing in her family house. She had the first Vitiligo spots on her genitals when he was 3. She is hyperactive and she has the Vitiligo patches on about 60% of her body now. The cuban Vitiligo lotion doesn't work on her skin. The cubans who suffer of the condition have to undergo psychic therapy because the Cuban National Health System, sees Vitiligo a mere psychological problem caused by stress or trauma.

  • AGERSPRIS, DENMARK 2019 JULY 30: CELINE, 23years old, posing in her bedroom. She had her first spot on the breast when she was 14years old. At that time she cured the spot as a fungus because of her doctor didn’t understand it was vitiligo

  • MILAN, ITALY. 2019 AUGUST 03 : Mariagiovanna posing ioutside her house. She is 44 years old and she has almost 70% of her body coverd with Vitiligo.
    She had her first spot on her back when she was 5 years old. She tryed phototherapy for a few time without results. She used also Cuban lotion when she was 18 with good results

  • MALIYA, GUJARAT INDIA. 2018 APRIL 30 : Nanji Bnai posing during work in a tailoring. He is 62 years old and had he first Vitiligo spots when he was just a little boy. Now he is almost totally white. He tired many Ayurvedic treatments but nothing worked. his mother had Vitiligo too but she is dead some years ago.

  • KALOL, GUJARAT,INDIA - 2018 MAY 07: Magaldas,59 yeas old,posing on the terracy of his house. He had the first Vitiligo spots on the hands when he was 5. His mother has Vitiligo as well and she is totaly white now.
    Gujarat is known as the Indian aerea to have the highest prevalence of vitiligo in the world about 9% of the population

  • ORUM, DENMARK 2019 JULY 27. BENJIAMIN 11years old, posing in his parents house. He had his first marks on the hands when he was 2years old.
    He is the only one suffering from vitiligo in his family. He says about himself: “I love my diversity”

  • CANTON CHINA, 2019 JUNE 2 : Eva posing in a hotel room. She is 20 years old. She had the first spots on the face and legs when she was 6 for no particular reason. Nobody else has Vitiligo in her family. She did phototherapy treatments. She says about her skin condition: "I don't care about Vitiligo in my daily life , but it is a really paranoia in my intimate life"

  • DATARDI VILLAGE, GUJARAT, INDIA, 2018 MAY 03: Shaikh, 64 old, posing in his medical clinic room next to his house. He works as doctor in several village around Datardi. He had the first spots 2 years ago on the face and on the hands after a work trauma. He helped a patient to give birth her son but the baby was born without breathing. So he gave him CPR saving his life. It was hard and very long. During breathing practice the doctor was afraid to fail . Next that, he developed the Vitiligo disease

  • HAVANA, CUBA, 2017 DECEMBER 25: Alejandro , 49 years old, posing in his flat. He was affected by Vitiligo after a very stressful period due to personal problems and his skin has become totally white very quickly.
    In the last three years, while steadily using the cuban vitiligo lotion, his pigments are coming out again, especially on his face and on small parts of his body. He wishes ardently to have his original skin color back again.

  • AHMEDABAD, GUJARAT, INDIA, 2018 MAY 06: Lila, 45 years old, and her son Alpesh, 23 years old, posing in their courtyard. Both of them are affected by Vitiligo. Lila had her first spots when she was 35 and now her skin is almost totally white. Alpesh had his spots when he was 10. The Vitiligo appeared on both bodies after a allergic reaction to a medical treatment.

  • RJSKOT GUJARAT INDIA, 2018 MAY 1: Vulabhui posing at his work station. He is 60 years old . he has Vitiligo just from a year . it starded from the hands without a reaso. he is the only one in his family . he did many cures withot results

  • COPENHAGEN, DENMARK - 2018 AUGUST 08: René, 55 yeas old, posing in his flat. He had the first Vitiligo spots on his body in the 2014. He is the only one in his family. HE doesn't know the reason for that and he doesn't care about Vitiligo treatments. He has not other Vitiligo cases in his family

  • MILAN, ITALY, 2019 AUGUST 03. ANGELICA, 47years old, posing in her flat. She had her first when she was 8years old after her parents divorce. She suffers from Hashimoto’s thyroiditis too

  • CANTON, CHINA - 2019 MAY 30: Xiaole, posing in a hotel room. He is 26 years old and he had the first Vitiligo spots when he was 19 on the legs after a very stressful period. He did phototherapy for six months with good results before in the hospital and then at home with a small lamp. After that he gave up it.he wrote a tale about is Vitiligo lifeand he would like to make a docufilm about Vitiligo in China

  • SVEDBORG, DENMARK 2019 JULY 28: KANYA ,12years old, posing in her parents house. She had her first spot around a mole on her arm. She got a biopsy for that.
    She is the only one in her family affected from vitiligo and she did no treatment for that. She doesn’t care about her skin problem.

  • HAVANA, CUBA- 2018 MARCH 12: Miladis, 50 years old,posing in her flat. She had the fist Vitiligo spots on the nape when he was 15 after an attempted rape. That mark is disappeared with the Cuban vitiligo lotion. Unfortunatelly many other marks have come out on her body and on her face but she stopped using the lotion because she was fed up to get it every day. So she is using the treatments no more. She was the only one in her family suffering from Vitiligo but now her daugther has a spot in the private parts.


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