drugsforneglecteddiseases

DNDi

Drugs for Neglected Diseases initiative. Using this space to tell the stories of neglected patients and those who strive to develop better medicines. nyti.ms/2vwJDPR

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Bernard Pécoul, the Executive Director of DNDi, in a photo from this week’s New York Times Op-Ed profiling DNDi! Activist and law professor Fran Quigley dedicates a whole “Fixes” column to our model, with a very human focus on Dr Pécoul (link to the oped in our bio). From the piece: “When Bernard Pécoul was a young physician working for Médecins Sans Frontières/Doctors Without Borders in the 1980s and 1990s, the only available treatment for Human African Trypanosomiasis, better known as sleeping sickness, horrified him. The protocol called for multiple, extremely painful, injections of melarsoprol, an arsenic-based compound. People in the Democratic Republic of Congo called it “fire in the veins.” Children who received it had to first be forcibly restrained. The treatment was so toxic that it caused fatal brain swelling in 5 percent of the patients, and it didn’t work for a third of those who survived it. But sleeping sickness is fatal if not treated, so there was no choice. What outraged Pécoul, who is French, was that melarsoprol had been around since 1949, and nothing better had been developed since. To the physicians at Doctors Without Borders, it was just one example of the lack of effective remedies for the diseases of the poor. “We were well aware of the difference between the quality of treatment we were providing and the care that was available to patients in high-income countries,” Pécoul said. Read more in the link!

A laboratory at the National Institute of Biomedical Research (INRB) in Kinshasa. The INRB is led by Jean-Jacques Muyembe-Tamfum, who helped discover Ebola during the first outbreak in Congo in the 1970s. In the photo, researchers analyse the filarial worms that cause river blindness and loaisis – also known as African Eye Worm. 📷@neilbrandvold

The first major clinical trial for an effective treatment for the severely neglected disease mycetoma has enrolled its first patient at the Mycetoma Research Centre (MRC) in Khartoum, Sudan. Mycetoma is a chronic infection mainly of the foot that may spread to other parts of the body and causes severe deformity. Infection probably comes from the soil or animal dung, and it is thought that most patients are infected by walking barefoot on thorns of the acacia tree. Current treatments are expensive, toxic, and ineffective. Hopes are for better treatment options in the future. Pictured, a patient at the MRC in Sudan. 📷@neilbrandvold

Kapila Sahoo, in Odisha state in India, suffers from the severe swelling in the feet and legs that is characteristic of lymphatic filariasis. For years now, the NGO @lepra1 India has been designing special footwear for people living with this devastating illness. These sandals provide comfort, encourage early healing, and prevent further injury and disability. Here, a trained physiotherapist from Lepra takes a measurement of Kapila’s feet, in order to create a customized pair of sandals. Kapila will soon be taking his first steps of dignity. 📷 Maneesh Agnihotri/DNDi
#neglectedtropicaldiseases #NTDs #filariasis #odisha #globalhealth #lepra

Divya lives in India’s poorest state Bihar – which also happens to be ground zero in the country for visceral leishmaniasis, known as kala-azar, or “Black Fever” in Hindi. In 2012 she fell sick with the disease – which is transmitted by the bite of an infected sandfly. Her father paid a large sum for the treatment and she appeared cured. But after a few months the disease came back. Her father took Divya to a local hospital for treatment, but he was told there was none available. Luckily, DNDi helped the family access free treatment near to where they lived and she was finally cured. Without treatment, kala-azar is fatal. 📷Kishore Pandit/DNDi.

Professor Ahmed M. Elhassan from Sudan has dedicated his life to patients suffering from visceral leishmaniasis. As a young doctor, he spent his time diagnosing and treating leishmaniasis patients under trees when the disease was relatively unknown. At the time the Ministry of Health in Sudan was not interested in this heavily neglected disease. His intense lobbying led to the creation of the Institute of Endemic Diseases at the University of Khartoum in 1993, which finally started to focus on leishmaniasis. Working with the Leishmaniasis East Africa Platform (LEAP), Professor Elhassan developed a passionate network of researchers all committed to finding better solutions for patients in Sudan and in East Africa. Here’s to the Grand Old Dean of Leishmaniasis, Professor Elhassan!

We're here in Toledo, Spain for the 6th World Congress on Leishmaniasis. Over a thousand people are here to talk about how to bring the best science to the millions suffering from this deadly and disfiguring disease. Please share photos using #WorldLeish6 !

It took five months before Patricia found out that the large lesion on her foot was cutaneous leishmaniasis. To get treatment, she had to travel to Julio Müller Hospital in Cuiabá, Brazil, where she received several painful intravenous drug infusions. “Treatment for leishmaniasis involves complicated injectable drugs,” said Dr. Márcia Hueb. “The diagnosis isn’t easy, it depends on skill and knowledge. We must move forward.” 📷 Mariana Abdalla. Join the conversation about #leishmaniasis using #WorldLeish6

Raj Kishore speaks to the community about visceral leishmaniasis, known as #kalaazar, in Bihar, India. As a DNDi community mobilizer he travels from village to village to raise awareness about #kalaazar in Bihar - where 90% of all cases of this deadly disease occur in India. Frequently misdiagnosed, people need to know the symptoms so they can get treated quickly. They also need to understand how to prevent breeding of the sand fly, which spreads #kalaazar. Information, research, and better treatments are critical for India to achieve sustainable elimination of the disease. 📷Kishore Pandit/DNDi

A few years ago Serafín Moreno – a 42-year old miner born and raised in Chocó on the Colombian Pacific Coast – believed he was about to die. The first lesion appeared on his forehead, and the second on his arm. After a month, the lesions had grown and multiplied, taking over his entire body. “I counted 98 in total at a certain point - I could no longer hide it and could not find work anymore,” he said. Serafín was infected with cutaneous leishmaniasis, an endemic disease in most of the country. Over 128,000 cases were reported in Colombia from 2001 to 2011. Serafín decided to spend the little money he had, leave his wife and children, and go to Medellin, about 180 kilometers away. He finally received treatment at the University of Antioquia in Medellin.For the next few weeks, we’ll be sharing similar stories about those affected by #leishmaniasis – please share yours using #WorldLeish6. 📷@fabio.nascimento

“This disease has destroyed my life,” said an emotional Eltahir Eissa on his third day of treatment for visceral leishmaniasis (also known as #kalaazar) at the Professor A. M. Elhassan Centre for Tropical Medicine in Dooka, Sudan. In 2012 he was misdiagnosed for another disease and received the wrong treatment. “I lost all my money and my wife divorced me,” he said. Many hospitals in rural areas of East Africa do not have the capacity to diagnose and treat people with this deadly, parasitic illness. “I had to suffer five years without treatment – finally I’m receiving the right one.” Eltahir received SSG&PM, a combination drug developed by DNDi and partners that has a significantly shorter treatment duration than that of the standard treatment. For the next few weeks we’ll be sharing stories from around the globe about those affected by this disease so closely linked to poverty – please join the conversation at #WorldLeish6

We've come a very long way in the fight against #SleepingSickness - only a decade ago thousands died every year from this parasitic illness. Now in the most affected country, the Democratic Republic of Congo, there were only 3000 cases in 2015. Many of these cases are in remote areas, like the village of Yalikombo, pictured, deep in the jungle along the #Congo river. Here mobile screening teams, supported by DNDi, have traveled in dugout canoes to screen upwards of 400 people a day for sleeping sickness. On this day they found zero cases - sign that we're turning the tide. We have everyone to thank for this incredible progress. 📷@neilbrandvold

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