The Reality of Cerebral Palsy in Zambia

In the developed world, a cerebral palsy diagnosis does not necessarily imply intellectual disability. In fact, many individuals with cerebral palsy are incredibly intelligent individuals that are limited only by impaired motor function. Cerebral palsy is caused by brain damage that can occur prenatally, during birth, or shortly after birth. As birthing methods improve and become safer, the prevalence of cerebral palsy decreases (Prevalence of Cerebral Palsy, 2014).

 

However, in Lusaka, Zambia, birthing methods are often far from safe. As we rode in a taxi for the final time on our way to the airport, we listened to a news story on the radio that discussed some of the challenges of giving birth in Lusaka. There is one major hospital that boasts the best birthing facilities in the area – UTH. It has become a status symbol to deliver a child at UTH, which is encouraging because more women are becoming conscious of the need for proper birthing methods and want to give birth in a safe location. However, UTH consistently runs out of beds in obstetrical wards. There is simply not enough space or doctors to serve the increased demand for the hospital’s birthing facilities. As a result, officials have asked that new mothers give birth at local clinics, reserving beds at UTH for difficult births and neonatal complications.

 

Many Lusaka residents called into the radio station in response to the story to share their thoughts and experiences. Few were positive. One man, whose wife had given birth three months prior, said that there was not even enough room in their local clinic for his wife to even lay down while in labor and delivery. Everywhere, people had been underserved due to lack of space and other resources. If both the hospitals and clinics are overfull, where should they turn?

 

While many health issues surround inadequate birthing facilities, one that particularly pertains to Special Hope Network and our work with the organization is the increased risk of disability in the neonate. For example, in the developing world, cerebral palsy is often the result of poor birthing methods (Arens, 2008)). But, in truth, the brain damage that results in cerebral palsy is only the first part of the problem for these children. Their parents and other family members often don’t know how to help them. The more developmental milestones they miss, the less their family feels it can do. In the compounds, children with cerebral palsy are left to lay in bed all day long, and, if they need to be moved, they are tied over their mother’s, grandmother’s, or sibling’s back with a chitenge. Rarely, if ever, are they encouraged to strengthen their weak, rebellious muscles. They become malnourished and their muscles waste away or are so contracted that their joints become contorted and immobile. The sad truth is that it is likely that some, if not many, of these children were not born with intellectual disabilities. However, due to lack of stimulation and engagement, they fall far behind their peers intellectually.

 

Our faculty advisor, Paige Pullen, a professor in the Curry School’s Special Education department, pointed out that it was the children with cerebral palsy that often had the greatest potential for improvements. However, this all depends on early intervention (Special Needs Hope, 2006). Through the implementation of motor exercises and stretching, more control can be gained over muscles. Mobility can be achieved through wheelchairs or other adapted equipment. Education can be accessible with patience, adaptations to curriculum, and augmented communication devices. But this isn’t happening in Lusaka, particularly not in the compounds in which Special Hope Network’s Community Care Centers operate. Yet, it would be unfair to blame the families, for few are educated about their child’s disability before they come to Special Hope. Nor can we blame the schools, there simply aren’t resources to allow them to accommodate for these children. When general education is so limited across the country, we cannot reasonably expect an infrastructure for special education and adaptive teaching methods.

 

As a group, we felt especially overwhelmed by the children with cerebral palsy at the centers, some of whom were as old as 15 and 16 years but could do nothing independently. Some lacked even a spark in their eyes or a smile in response to someone saying hello. We didn’t know where one would begin to help these children. It was heartbreaking. As can be seen in the pictures, some families have been able to access wheelchairs with the help of Special Hope and other NGOs. Some still use chitenges wrapped over their back, even as the child grows into a teen and a young adult.

 

How can we begin to surmount such a daunting challenge? The weight of the problem feels enormous. As fellow humans, we have much more than improper birthing methods to consider. We must teach both men and women about prenatal care, about what constitutes a safe birth, about neonatal care, and about care and resources for people with disabilities. As we spent more time with Special Hope Network, it became clear that there is a great need for service in these areas. Some disabilities can’t be avoided, like Down syndrome and other genetic disorders, and autism. However, by instituting health care facilities that focus on prenatal health, safe births, and neonatal care, perhaps we could stem the number of children born with preventable disabilities, thereby improving the quality of life and potential for success for those children and their caretakers.

 

Two of the children with Cerebral Palsy in the Garden compound.

Two of the children with Cerebral Palsy in the Garden compound.

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This picture was taken at Special Hope’s Resource Center and it demonstrates the adapted chairs that many children with Cerebral Palsy spend their day in while doing work at the center.

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Emily and Lauren working on stretches with the children and their moms at the Garden compound.

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Lauren working one-on-one with a child to stretch out his tight muscles at the Garden compound.

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This picture shows Paxton helping his friend get situated in his wheelchair before leaving.

Arens, L.J., Molteno, C. D. (2008) ‘A comparative study of postnatally-acquired cerebral palsy in Cape Town.’ Developmental Medicine and Child Neurology

Prevalence of Cerebral Palsy. My Child, the Ultimate Resource for Everything Cerebral Palsy (2014). http://cerebralpalsy.org/about-cerebral-palsy/prevalence-and-incidence/

Special Needs Hope (2006). Child Cerebral Palsy Early Intervention Is Critical. http://www.special-needs-hope.com/cerebral-palsy-early-intervention.html

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Ku-punzitsa Apunzitsi Update

Hi guys! So this blog post was originally composed during our trip while we were in Cape Town for meetings but we were unable to upload it at the time due to connection difficulties. Sorry for the delay but here it is!

My name is Amanda Halacy, I am a rising second year, and my teammates are Lauren Baetsen and Emily Nemec, both rising fourth year Biomedical Engineering students. This summer, we’ve been working with Special Hope Network (SHN), an NGO based in Lusaka, Zambia that provides education to children with intellectual disabilities. Our main project has been to collaborate with SHN to improve teachers’ skills in planning fine motor, gross motor, literacy and math lessons.

All of the teachers employed with SHN are all high school Zambian graduates. They are very eager to learn because they see the children progressing much faster as a result of their new lesson planning training. Developing the teachers’ executive function skills (lesson planning, task management, goal setting, etc.), plays a vital role in the children’s literacy, life skills, and social skills. All three areas directly correlate with physical health, opportunity for upward mobility, and quality of life. Thus far through our meetings, the teachers have been extremely attentive and involved. We have learned so much by working with them and we look forward to continuing that work, focusing especially on scope and sequences for the kids, when we return to Lusaka.

The largest challenge that we have faced thus far is encouraging the teachers to be creative and flexible when it comes to planning their lessons. When given a lesson plan, a teacher should be able to adjust the activity and difficulty based on a child’s individual goals and needs (IEPs). However, failure isn’t seen as a stepping stone to success in Zambia as it is in the US. It’s difficult to work with the teachers on lesson planning trial and error because they feel like every lesson plan needs to be an immediate success when in reality, it’s often better to fail and learn from the mistakes for next time.

We are in Cape Town this weekend having just met with Carole from Nal’ibali. Nal’ibali is a “reading club” program in libraries, schools, and community centers in six provinces in South Africa. Their goal is to encourage literacy through storytelling and reading for pleasure. They train local volunteers, often teachers, librarians, or parents, in shared story book reading techniques. Our team was very impressed by Nal’ibali’s network and motivational practices in place. They have created a strong communication network by encouraging volunteers to use a Facebook group, WhatsApp, and more to check in and ask each other questions. We had a great conversation about Nal’ibali’s training and are excited to take ideas back to Lusaka!

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Seen above are some of the teachers that we worked with, this was taken at our very last teacher meeting after completing our finalized Animal Unit.

Pictured is our full group taken on the porch of SHN's Resource Center.

Pictured is our full group taken on the porch of SHN’s Resource Center. From left to right: Emily Nemec, Lauren Baetsen, Professor Paige Pullen, Amanda Halacy and Joann Judge. 

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This picture was taken in Cape Town after one of our meetings with Nal’ibali.

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Adventures in Cambodia

Stepping off the plane onto the tarmac, the first thing we noticed was the heat. The road itself seemed to shimmer from the glancing rays of the sun, as we sped along in a tuk-tuk, the local mode of transportation.

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The second thing that we noticed was the genuine hospitality that embraced us during the entirety of our trip. Every person that we met was kind, friendly, and welcoming. We were greeted at the airport by the staff members and children of Build Your Future Today Center, our partner organization. Our next step was SamSo Guesthouse, the hotel that was our home for the five weeks we were in Cambodia.

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From there, we visited the BFT Center located in Siem Reap, Cambodia to attend the Children’s Day event they had planned. All of the students performed with their respective classes, from dances and songs to speeches about the significance of Children’s Day.

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From then, we fell into a routine that was somehow completely unpredictable. We did not have a predetermined schedule; every week would involve something different. UVA GlobeMed helps BFT by funding the projects of two specific villages: Arak Svay and Sre Robong. We visited these two villages and got to see firsthand the progress that had been throughout the years of our partnership.

Arak Svay is a self-sufficient village in which the members take care of one another. They villagers also cook their own food. Some of the women weave baskets or make bracelets for sale in the city.

During our stay, we also took BMI measurements of the children in Sre Rebong, as well as helped build a house in Arak Svay along with the monks of the area.

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During the evenings, we taught English at BFT. The lessons largely consisted of grammar and we found that the students were all very eager to learn. BFT has a very clear vision for the future, and from what we saw, it is evident that funds are being used efficiently and effectively. The biggest difficulty we encountered during our stay was the language barrier. Though the BFT staff spoke good English, it was more difficult to communicate with the villagers. Furthermore, despite all that BFT is doing, there is still much poverty in the villages. Some of the more rural villages do not always have access to clean water and the schools have only a handful of classroom supplies. However, we are confident that together with BFT, GlobeMed will continue to have a positive impact on these villagers and diminish the difficulties in their lives.

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Reflections from Nicaragua

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Masaya Volcano

Greetings from Charlottesville this time,

 Now that I am back in the States. I have chance to reflect on my time spent abroad and what I learned not only about Nicaragua and their health/waste systems but also about myself too. The town of Siuna is such an interesting town with a unique history in the mountains of central Nicaragua and I really appreciate the opportunity to go off the beaten path that tourists usually take and see how many Nicaraguan live.

As I discovered earlier in Siuna, things can be quite hectic there with many obstacles popping up. I had been have trouble finding the garbage truck there since it did not follow the same schedule that I had been given. So two days before I left, I went into the city hall with my translator, Eva, and somehow, thanks to her miraculous ability we happened to get an appointment with the hospital administrator who oversaw the garbage trucks schedules and routes. After speaking with him about following the truck, he told me simply come to the city hall at 6 and follow the truck on the entire route. Finally, after so much waiting I was going to be able to collect what I needed and on the last day I was there! So I had a driver who would follow the truck around town on its route and my job was to geocode the location of every stop so that I could find its route and distance traveled. I also had to mark down how much time was spent at these stops so we could get a more accurate picture of how the garbage truck operates on its schedule. It was quite an experience. Following a large blue garbage truck around town the small streets trying to avoid taxis, horses, dogs, and motorbikes was quite a sight. There even was a fender bender between the truck and a taxi. No one was injured but there was a fair amount of raised voices in the street!! All in all it was quite fun thrill ride in its own way.

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Following the garbage truck

One of my favorite moments from this trip was actually from following the truck and just sitting in the passenger seat listening to Reggae with the driver. He could barely speak english and I am completely new to spanish but we both love some Bob Marley. The driver even managed to make some recommendations for me through lots of hand gestures and broken English. 

On my way out of Siuna I had the opportunity to thank many of the people who helped me in my project. And I realized even though it was a solo project, the successful parts I was able to accomplish would not have happened had it not been for these many people who took their time to help a foreigner out. And as my little 12 seat plane took off from the gravel airstrip past the local baseball diamond (Baseball is just as popular as soccer in Siuna), it dawned on me how much the little town had grown on me in a mere two week stay.

Just to give you an idea about the state of Nicaragua’s roads: the flight from Siuna to Nicaragua’s capital, Managua, is less than an hour. But the drive by bus takes about 10 hours! And that is with no rain. One of the people working for the non-profit which helped coordinate my trip told me a trip took him 2 days because the rains washed many of the roads along the way. Thank goodness I was on the flight! On my way into Nicaragua I got the chance to see the historic downtown of Managua.

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The old Managua cathedral

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On my way out I was determined to see some of the area outside of Managua. I ask the NGO group in Managua what were some of the best places to see and they called a trusted cab driver who drove me around to 4 different sites within about 50 km of Managua. I got to visit the Masaya Volcano, the locally famous Masaya market, Catarina, and Granada. 

Nicaragua has 72 volcano’s I got to visit one active and one which caved in. To be honest the active one was a little anti-climatic. You can drive up to it but once you get there and peer inside all you see is a mix of water vapor, carbon dioxide, and sulfur dioxide,The caved in volcano on the other hand gives you some fantastic views of the entire area from the large Lake Managua to massive Lake Nicaragua. The Masaya market was inside of an old colonial building and was quite a maze but I found some good souvenirs and I got to see a local parade. Catarina is on cliff next to Apoyo Lagoon, a beautiful clean lagoon used to be a crater and filled up with water. It has great views of Lake Nicaragua and the active Mumbacho volcano in the distance. And finally we had some time left to drive through Granada, the old capital before Managua, and see lots of colonial architecture.

 

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Caved in crater at Masaya. Mombachu volcano is in the distance.

 

 

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Rushed picture in Granada

 

While all these views were terrific, once again one of my favorite moments was driving around in the late afternoon sun while listening to the taxi driver’s favorite Beatles tracks. Sometime’s it just the little things that really make an impression.

Its been fun!!

Serge

 

 

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Kumasi, Ghana

Molding New Realities

With the papermaking workshop now over and having returned to the US, I have had some time and distance to reflect on what I experienced. Ghana, and the Ashanti region in particular, is a place filled with life, culture, creativity and opportunity.

Market area in downtown Kumasi.

Market area in downtown Kumasi.

Perhaps because I was only there for a relatively short amount of time, I felt a certain sense of optimism among people but also uncertainty. People seem to have a strong sense of identity and take pride in their culture, welcoming those from outside to share. There is a sense that things are on the move and a high value is placed on education. However, there is also a degree of instability. When I arrived, cars were lined up for hours due to a national fuel shortage. The exchange rate was the equivalent of about one US dollar to three Ghanaian Cedis. Over the course of five weeks, the Ghanaian Cedi depreciated so much that one dollar would buy almost four Ghanaian Cedis. Prices changed from one day to the next and businesses had to maneuver accordingly, ordering and pricing goods and services in a constant state of flux. Ebola had become engrained in the national consciousness as news of increasing death tolls entered from neighboring countries. Miraculously, it had not yet entered Ghana.

Open-air studio where workshop took place.

Open-air studio where workshop took place.

As the papermaking workshop unfolded in this context, questions of global health in relation to the project sometimes seemed far afield. However, a dedicated group of about 10 people showed up regularly, eager to learn a new technique and see how something rampant in the surrounding environment could be transformed into something beautiful and useful. For a week, we beat raw fibers from the inside of the bark of the Paper Mulberry tree, made vats of pulp from both the Paper Mulberry and textile scraps, pulled molds to make sheets of paper, and flattened them to dry.

Emmanuel, one of the children of the family I was staying with, and me pounding Paper Mulberry fibers.

Emmanuel, one of the children of the family I was staying with, and me pounding Paper Mulberry fibers.

Kwame pulling sheets of paper from vat.

Kwame pulling sheets of paper from vat.

Gloria pulling molds from vat of recycled textile fibers to create paper.

Gloria pulling molds from vat of recycled textile fibers to create paper.

A simple drying mechanism we set up for the workshop.

A simple drying mechanism we set up for the workshop.

Dr. Amenuke's daughter and son.

Dr. Amenuke’s daughter and son.

More than the papermaking itself, the project was a way for people to come together, step away from their daily routines and let their imaginations run wild. Participants came from a variety of backgrounds. Dr. Dorothy Amenuke and Mr. Kwabena Poku are fine arts professors at the local university, KNUST and Dorothy would bring her two children with her every day. Former MFA students, Frederick Bamfo and Geoffrey Akpene Biekro, also attended. Kwabena Akrasi and James Kweku Duffy are communications students and Kwame Donkor is studying engineering at KNUST. Bernard Coleman was a young man who just finished a year of national service after receiving a degree in horticulture and had traveled from the Volta region to join the group. Niels Staats had emigrated from the UK and was starting an arts non-profit and residency program in Kumasi. Even Gloria, the young woman who helped with the children and housekeeping for the family I was staying with, was able to join after I learned she was interested in textile design. All of us came together daily at the home of Caterina Niklaus and Smart Sippah who provided us with a space in which to work as well as an inspiring model for how to create a living space that heavily incorporates and celebrates the diversity of the natural environment.

Geoffrey Akpene Biekro, aka "Captain," pounding Paper Mulberry fibers.

Geoffrey Akpene Biekro, aka “Captain,” pounding Paper Mulberry fibers.

Kumasi, Ghana

Kwabena Akrasi presses excess water from newly made sheets of paper.

Caterina and Smart's home where the workshop took place.

Caterina and Smart’s home where the workshop took place.

Caterina's attention to detail was prevalent throughout her home.

Caterina’s attention to detail was prevalent throughout her home.

Smart Sippah sharing his plant knowledge with group.

Smart Sippah sharing his plant knowledge with group.

Over the course of the week, Dr. Amenuke and Mr. Poku talked about ways to incorporate new techniques and media into their curriculum. Kwabena and James began to formulate ideas for how to grow a business that would both generate income and responsibly produce a Ghanaian-made product in short supply. Kwame explained some of the mechanics behind the basic machines we were using. Niels imagined artists who might be drawn to a residency in Ghana specifically to build upon their papermaking practice in a local context. Though Mary Hark took a very hands-off approach, providing participants with the basic knowledge regarding the materials and process, she laid the ground for participant-led exchange, collaboration, and generation of new ideas.

Mary demonstrating how Papyrus could be another local plant used to make strong paper.

Mary demonstrating how Papyrus could be another local plant used to make strong paper.

Paper Mulberry branches from which raw fibers were harvested.

Paper Mulberry branches from which raw fibers were harvested.

Kumasi, Ghana

Fried plantains.

Diagrams showing spread of Paper Mulberry.

Diagrams showing spread of Paper Mulberry.

Kumasi, Ghana

Smart demonstrating Annatto (Bixa orellana).

When I think about the biggest impact the papermaking project had, I think it would be its ability to bring people together who might not otherwise meet and introduce them to a new way of working that draws on local materials. Though still operating on a very small scale, the papermaking project has the potential to turn into something much larger. It could take on a variety of forms but will have to be done so in a sensitive, responsible manner. It could operate on a workshop basis, attracting an international audience and contributing to the growing tourism industry in Ghana. Its model could be replicated by innovative, enthusiastic people like Kwabena and James and turned into a business that employs a variety of local farmers, artisans and technicians. Its end product could be folded shaped and sculpted into a whole set of finished goods that could be sold nationally to the many hotels popping up around the country. It could be incorporated into the local curriculum as a means to raise awareness about the implication of invasive plant species and the Paper Mulberry in particular. It could also remain as is, providing a base from which visions can grow and participants can think about how to direct their education, skills and efforts in new ways. Or it could be a combination of these. All are valid and possible and offer unique, long-term contributions to global health.

Dr. Amenuke demonstrating creative use of handmade paper process.

Dr. Amenuke demonstrating creative use of handmade paper process.

Though papermaking will not offer a solution for eradicating Ebola or answering to fuel shortages, it can generate a soft wave that gently pushes people to form partnerships and re-imagine their possibilities. Those who I met over the course of my stay in Ghana who have already been involved are living proof. The farmers who gather the raw fibers from the Paper Mulberry appreciate the extra income and assured us of their continued interest in future work. Gloria called me from Ghana the day after I returned to the US to tell me she had told her mom (who is a seamstress) about the experience and was thinking about its relation to her textile design work. The Ashanti are known for their astute sense of business and also for their strong and lively culture and will undoubtedly find ways to morph the project in ways that make it suitable to the environmental and cultural landscapes in which they operate.

Group shot in front of the studio.

Group shot in front of the studio.

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The reality of hospital waste disposal and collection in a rural Nicaraguan town

Hello from from rainy Nicaragua!  

UVa has had several projects over the past few years in the rural municipality of Siuna. There was one a couple of years ago where a group of students built a garbage station at the local hospital to make the disposal of hospital waste safer, easier, and more convenient. My project during my brief two-week stay in Siuna would be to collect data and observe how much waste is generated by the hospital, what kind of waste it is, and how is that waste disposed of. And as I near the end of my stay, I can tell you that nothing is what I expected it to be. In fact almost all of my assumptions about what things were going to be like were proved false.

Siuna is a bustling little town that you can explore in about a day. Being in the large north east province of Nicaragua, the province is self-governed with little oversight by the main Sandinista government which governs the rest of Nicaragua. That said there is a more visible military force here since the town is very close to the border of Honduras where there was resistance activity during the Contra scandal where the U.S. funded Nicaraguan resistance back in the 80’s. While the town is not large the surrounding area is quite expansive with communities as far as 2 hours away still considered part of the municipality. Trash is visibly a large problem in town as there is only garbage truck and lots of trash is either thrown in the streets or creeks and rivers nearby.

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Morning in Siuna

The hospital here was quite surprising as well. It was a collection of about 5 or 6 one story building all brightly painted in blue, green, or pink and lined with palm and coconut trees. These buildings house administration, the visiting/registration center, the sick wards, kitchens, and a couple others I never learned about. There is also a garbage disposal area, and incinerator. What I quickly learned however is that things in Siuna are very unpredictable. My meeting with the hospital administrators was moved back several days once I arrived in Siuna giving me free time to explore the city and the surrounding communities. Next the hospital administrator with whom the project was previously explained had been moved to another position so I had to meet with a new hospital administrator to explain the project again so I could have access to the disposal area. Once I was given permission I quickly found out that much of the trash was not being disposed of correctly. Almost all of the hospital trash including gauzes, bandages, and used medical bags were mixed in with regular waste making it impossible for me to measure how much of each category they were generating. While the more dangerous hospital waste was to be put in the incinerator. I found that vultures had found their way into the incinerator and thrown trash everywhere. Finally, the garbage trucks schedule was just as unpredictable leaving me waiting for half a day before giving up.

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The Siuna Hospital just inside the entrance

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The new garbage station

All these challenges required unique solutions to make sure I can collect as much data as possible in a safe manner. My complete lack of Spanish is another challenge and while I am learning as much as possible I still rely heavily on a translator who is extremely helpful.  Everyday can bring its own unique challenges to overcome and I have learned quite a bit about learning to expect the unexpected. I guess that sort of chaos is just part of the whole learning experience!

Take Care everyone,

Serge

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XDR-TB in Lima, Peru: the human side

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In the hospital, the tuberculosis program head nurse (Raquel) talks to me about the recent admissions for XDR-TB.

Arriving in Lima, 2014

I arrived in Lima not knowing what to expect. Last year, I had spent six months working with extensively drug-resistant tuberculosis (XDR-TB) patients through Socios en Salud, the Peruvian branch of Partners in Health. I had interviewed them about their treatment experience in their homes and in the hospital. Especially with those patients in the hospital, where they stayed on average for six months, I had developed a connection through repeated interactions and a small bi-weekly activity. We did everything from origami to yoga.

This year, I was fortunate enough to be able to return through funds provided by the UVA Center for Global Health. I hope that this post shows the importance of Partner’s in Health (Socios) work in Peru and helps to reflect on the need to develop better treatments for the people who die every day from drug-resistant TB.

 

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Cutting the panetone at one of the birthday celebrations for one of the hospitalized women.

In 2012, the Peruvian Ministry of Health (MINSA) implemented a new treatment scheme for XDR-TB. It had almost universally achieved culture conversion, meaning no tuberculosis in the patients’ lungs. A positive culture indicates that there is live Mycobacterium tuberculosis in the sputum, and is used as the gold standard laboratory measure of a treatments’ efficacy.

But the week before I had left, one of the patients with whom I had spent time passed away, despite negative cultures.

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Outside the house of one of the patients with one of the Socios nurses. I accompanied him to administer treatment a week before the patient passed away.

So, when I stepped into the hospital for the first time the day after I arrived, it was not without tredeptation. Over the next days, I found out about two patients who also had passed away. Despite my expectation, remembering their stories and hopes for a cure as they became culture negative and began to gain weight, the personal nature of the tragedy hit me.

The death of J.

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Patients spent up to six months in the TB ward during treatment and developed friendships. This photo was taken in one patients’ home, mourning the death of J. and the others she had known who passed away.

In June, one of the patients returned to the hospital. Last year, I had helped him get his Peruvian social security number (DNI), delivered a birthday card to his granddaughter and bought him shoes when his broke—

and he had trusted me with his story, the death of his wife while he was incarcerated, his childhood on the streets, the joy he took from (of all things) knitting. After nearly a year hospitalized, he had been discharged.

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J. and other patients working together to knit.

When I found out he had entered through the emergency room, I was on the other side of the city. I resolved to go the next day. But it was too late. He had gone into kidney failure, as a side effect of his TB medications, and the nephrologist wanted to see proof of a recent negative culture to start him on dialysis. In the three-day scramble to find the papers and present it, the dialysis came too late.

He entered a coma and passed away on the fifth day.

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J. won the TB ward’s contest with this drawing. In English: if one thing is sure, it’s that tuberculosis can be cured. We all fight tuberculosis. Get on board.

Common tragedies

As I told the story to a member of the PIH team who has worked all over the world, he told me (not minimizing but factually) that unfortunately stories like this were all too common.

That afternoon, I went to a group therapy session for recovering patients who had DR-TB. As I listened to their struggles with poverty and stigma, many so common to those I had found in my interviews. Not knowing where the next meal is coming from; not knowing who will raise their children if they die. These common tragedies, those that affect the lives of people at the edges of society who are not expected to make it.

People who are expected to remain at the edges, hanging on to not fall off.

This is for them.

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