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Mrs Iqbal: ‘Household chores are the main responsibility of a woman, but I can’t do them’
“It is a big problem. I can’t cook food for my husband. It has been five months now and I am in great pain. For any woman, household chores  are main responsibility of a woman, but I can’t do them.”
Mrs Iqbal is a housewife living in Peshawar. She was at a wedding in Bajaur Agency, a former district of FATA (Federally Administrated Tribal Areas) of Pakistan, when she contracted Cutaneous Leishmaniasis. With every passing day, the lesion continued to grow bigger and bigger. She met many doctors in her area, but there was only one who said it was Cutaneous Leishmaniasis and that she needed to get specialised treatment. Her husband is a rickshaw (tuk tuk) driver, who is going to drive her to the hospital each day.
Mrs Iqbal, a housewife living in Peshawar, photographed at MSF's cutaneous leishmaniasis treatment centre in Peshawar on 30 May 2018. "Household chores are the main responsibility of a woman, but I can’t do them. I can’t cook food for my husband. It has been five months now and I am in great pain."
© Nasir Ghafoor/MSF

Bringing hope to sufferers of a neglected disease

Mrs Iqbal, a housewife living in Peshawar, photographed at MSF's cutaneous leishmaniasis treatment centre in Peshawar on 30 May 2018. "Household chores are the main responsibility of a woman, but I can’t do them. I can’t cook food for my husband. It has been five months now and I am in great pain."
© Nasir Ghafoor/MSF
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In May, MSF opened a treatment centre for cutaneous leishmaniasis  in Peshawar - its fourth in Pakistan.

Already, the centre has admitted more than 800 patients and is operating at full capacity, as are MSF’s three other treatment centres: two in Quetta and one in Kuchlak.

MSF is currently the biggest provider of treatment for the disease in Balochistan province, in the south of Pakistan. Meanwhile, in Khyber Pakhtunkhwa province, in the north, MSF’s Peshawar clinic is the only major centre providing free diagnosis and treatment for cutaneous leishmaniasis in the whole region.

Video

MSF's cutaneous leishmaniasis project in Peshawar, Pakistan

In the waiting room of the Peshawar treatment centre sits Taj Bibi, whose entire family contracted cutaneous leishmaniasis after being bitten by sandflies, leaving them with painful skin lesions.

“My husband, my four sons and my older daughter were stung while working at a brick factory,” says Taj Bibi. “I was bitten by the sandfly at home, just like my youngest daughter, Zena. The environment we live in is dirty and there is no sanitation. Many of our neighbours and their children have been infected too.”

Taj Bibi: ‘All my family was bitten by the sandfly.‘ (Patient at Peshawar treatment centre)

Taj Bibi is the mother of six children. She, along with her husband, four sons and two daughters have been infected with Cutaneous Leishmaniasis. All have been or are being treated in the MSF treatment centre in Naseerullah Babar Memorial Hospital. Taj Bibi and Atef, her 18-year-old son, were infected on the hand, the leg and the face; her daughters, Zena, seven years, and Asma, eight years, were bitten on the face. They live 50 kilometres from Peshawar and come to the city every week on public transportation to receive their intra-lesion injections. 
“I was the first one in the family to be bitten by the sandfly and to contract Cutaneous Leishmaniasis,” she said. ‘I went to see a local doctor who explained me about the disease, but he said that no treatment was available in Pakistan.” 
Currently the patients still only can rely on international organizations to get their treatment. 
“I was told that a treatment was available on the black market, so I started buying injections from there. I took 15 injections, but nothing changed, and in the meantime other members of my family started to be infected. After a year, we were finally recommended to come to MSF treatment centre.”
Atef, Asma, their father and three other brothers work in a brick factory. They remember being bitten when working. It was not really painful, but the lesion turned black quickly, started growing and they started running a fever and had pains all over their bodies. 
‘Zena and I were bitten at home. The environment where we live is dirty, there is no drainage system and so a lot of people get infected in our neighbourhood.’
The sandfly responsible for Cutaneous Leishmaniasis often lives in stagnating water and more generally in places where no water sanitation systems are available.  
‘We will use repellent in the future so as not to be bitten again. All the family is getting better now. We are satisfied and thankful to be treated successfully here.’
Taj Bibi, along with her husband, four sons and two daughters have been infected with Cutaneous Leishmaniasis. All have been or are being treated in the MSF treatment centre in Naseerullah Babar Memorial Hospital, Pakistan, 5 October 2018.
Laurie Bonnaud/MSF

Why is cutaneous leishmaniais so hard to control?

The disease mainly affects people from rural areas, in places where living conditions are poor and clean water and sanitation almost non-existent. As a result, it is not generally seen as a public health priority.

Major challenges to controlling the disease in Pakistan are that there is a general lack of awareness about the disease, too few healthcare workers trained to deal with it, and no data collected at national level on its prevalence.

Added to this, the drugs to treat it are not widely available. The risk of shortage of the drug, that has to be imported, is a constant threat not only to the proper functioning of the treatment centers, such as MSF’s, but also to the health of people living with the disease.

When Taj Bibi was first diagnosed by a local doctor, she was told that no treatment existed in Pakistan.

Taj Bibi and her family – like so many of the patients who eventually arrive at MSF’s treatment centres – initially turned to the black market as no drugs were available in the public health facilities in the areas where MSF intervenes.

The drugs found on the black market are generally of poor quality or out of date, making them ineffective. This only adds to the suffering of people like Taj Bibi and her family, and increases their sense of neglect.

Saeepur, a taxi driver in Peshawar “My feet hurt so much that I can’t drive my taxi anymore. I can’t buy food for my children anymore. My savings are almost gone. I hope I heal quickly so that I can go back to work and earn money again.”
Saeepur Khan: ‘I can’t buy food for my children anymore because of this disease’
Saeepur Khan is a taxi driver in Peshawar. A lesion on his foot caused by the bite of sandfly had grown larger over the last few months. His foot hurt so much that he could not drive his taxi anymore, depriving him of his only source of income 
“My savings are almost gone. I have not driven the taxi for many weeks now. I can’t. It is very painful to push the break paddle with this wound on my foot. I thought it was a simple skin disease at first, but I now realise it’s a specific disease, which needs specialised treatment. I hope I can quickly go back to work and earn money again.”
Saeepur came to know about the Cutaneous Leishmaniasis diagnosis and MSF treatment facility in the Naseerullah Babar Memorial hospital through his friends. He has seen his lesion shrink and grow larger again many times. This time, he is hopeful that it will only get smaller and smaller.
Saeepur Khan: ‘I can’t buy food for my children anymore because of this disease’ Saeepur Khan is a taxi driver in Peshawar. A lesion on his foot caused by the bite of sandfly had grown larger over the last few months. His foot hurt so much that he could not drive his taxi anymore, depriving him of his only source of income “My savings are almost gone. I have not driven the taxi for many weeks now. I can’t. It is very painful to push the break paddle with this wound on my foot. I thought it was a simple skin disease at first, but I now realise it’s a specific disease, which needs specialised treatment. I hope I can quickly go back to work and earn money again.” Saeepur came to know about the Cutaneous Leishmaniasis diagnosis and MSF treatment facility in the Naseerullah Babar Memorial hospital through his friends. He has seen his lesion shrink and grow larger again many times. This time, he is hopeful that it will only get smaller and smaller.
© Nasir Ghafoor/MSF

Physical and emotional scars

A serious consequence of this little-known disease is the psychological suffering that it creates. Its victims often feel excluded from their community because of the unsightly lesions it causes, and are left feeling rejected and ashamed.  

Nabeela, aged 11, was taken out of school by her parents after she was bullied by classmates because of the lesions that covered much of her face.

“The other students constantly mocked her and isolated her,” says Nabeela’s father. “We ended up removing her from school.”

After treatment by MSF, her lesions have improved. “Previously there were lesions on the entire upper part of her face,” says her father. “Her treatment has removed some of them.”

Many girls affected by the disease fear that their lesions will dash their chances of getting married.

Nabeela: ‘We had to take her out of her school’
Nabeela is 11 years old. She used to go to school, but she stopped when she contracted Cutaneous Leishmaniasis. 
“The other schoolchildren were making fun of her because of her lesions and she became isolated, so we decided to take her out. She will go back to school for an exam she has and then when her treatment is completed,” her father explained. 
Nabeela was bitten on the nose, but soon the infection spread until it covered most of the upper part of her face. 
“We went to see different doctors; we tried so many things over many months without results: creams, unguents, injections… And one day a doctor from Peshawar came to our village and recommended that we bring her to MSF treatment centre.” 
Nabeela’s young brother and her sister also have Cutaneous Leishmaniasis. But it is complicated for her father to make daily trips to the treatment centre with three children on public transportation, as it is located almost two hours away from his home. So, “when Nabeela is better, I will come back here with my other daughter.” 
“I see many people here with the same lesions as mine and I see them improving. I also see myself healing. That gives me hope,” said Nabeela.
Nabeela, with her father and brother at MSF's cutaneous leishmaniasis treatment centre in Peshawar, 5 October 2018. Nabeela’s younger brother and her sister also have cutaneous leishmaniasis. But it is complicated for her father to make daily trips to the treatment centre with three children on public transportation, as it is located almost two hours away from his home. “When Nabeela is better, I will come back here with my other daughter,” her father says.
Laurie Bonnaud/MSF

The disease also causes physical suffering and economic exclusion.

Taxi driver Saeepur Khan had to stop working because of the pain in his feet, leaving him with no way to earn a living – though he is hopeful that the treatment will allow him to work again soon.

Treating cutaneous leishmaniasis

The only drug currently available to treat cutaneous leishmaniasis is meglumine antimoniate, which must be injected either into the muscles or directly into the lesions for 20 to 35 days, depending on the severity of the infection.

Ten-year-old Sabit was infected with cutaneous leishmaniasis a year ago. He is now mid-way through a course of injections and well on the way to recovery. “The injections hurt, but I'm happy to finally be able to cure myself of this disease," says Sabit.

Sabit, 10 years old “I believed that it would go after a year, but it did not. Every time it got smaller, I was happy that it would go. However, it grew bigger again so many times.”
Sabit Ullah: ‘I thought it would go away after a year, but it did not’
Ten-year-old Sabit is found the first lesion in his foot one year ago. In Khyber Pakhtunkhwa, Cutaneous Leishmaniasis is commonly known as  Saal Dana, ‘a wound that stays for a year’, and everyone kept telling him that it would take a year to go away. He could not run or play because of the infection in his foot. He was patient, thinking all the time that it would go away after a year. But it did not.
“I believed that it would go after a year, but it did not. During the last 12 months or so, it often became smaller. Every time it got smaller, I was happy that it would go. However, it grew bigger again so many times.”
Sabit Ullah and his elder brother were told by a neighbour about the Saal Dana treatment facility of MSF in Peshawar. Now, Sabit is receiving treatment by our teams there. The injections right into the lesions are really painful for the young boy, but he is happy knowing that he will eventually be cured of this long-standing disease.
Sabit Ullah: ‘I thought it would go away after a year, but it did not’ Ten-year-old Sabit is found the first lesion in his foot one year ago. In Khyber Pakhtunkhwa, Cutaneous Leishmaniasis is commonly known as Saal Dana, ‘a wound that stays for a year’, and everyone kept telling him that it would take a year to go away. He could not run or play because of the infection in his foot. He was patient, thinking all the time that it would go away after a year. But it did not. “I believed that it would go after a year, but it did not. During the last 12 months or so, it often became smaller. Every time it got smaller, I was happy that it would go. However, it grew bigger again so many times.” Sabit Ullah and his elder brother were told by a neighbour about the Saal Dana treatment facility of MSF in Peshawar. Now, Sabit is receiving treatment by our teams there. The injections right into the lesions are really painful for the young boy, but he is happy knowing that he will eventually be cured of this long-standing disease.
© Nasir Ghafoor/MSF

The influx of patients to the MSF treatment centres demonstrates the massive need for cutaneous leishmaniasis services across all affected areas. The disease affects hundreds of thousands of people, most of whom cannot afford treatment.