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Portrait photo of female patient at a PIH clinic in Malawi
HIV patient Rose Kapeni*, 25, rests at Neno District Hospital in early October, while recovering from surgery for a skin condition that had affected her for years. When PIH staff visited her at her home in September, Kapeni was bedridden and missing HIV checkups while struggling to care for her three children. After surgery, recovery and financial support from PIH, she received a new home in February, enabling her and her children to start a new chapter in life. *Name changed (Photo by Zack DeClerck / Partners In Health)

Wearing a “Feeling Lucky” T-shirt as she held her children close, Rose Kapeni* gently opened the front door of her new home and leaned forward to look inside.

She smiled, and sighed in happiness and relief. Then she walked in to check out her new surroundings—with an excited group of friends and supporters right behind her.

The joyous home-handover ceremony for Kapeni and her three children was filled with singing, dancing and laughter Feb. 7 in Neno District, Malawi, where friends, community members, and Partners In Health staff gathered to formally present and open the newly built home. The ceremony culminated a long period of illness and recovery for Kapeni, and showed how community-based health care can help provide healing that is far more than physical.

“I’m beyond grateful that I was found and supported during this very difficult time,” Kapeni said. “I hope and pray PIH can continue to do this work, as there are many others in the community who are struggling.”

Kapeni, 25, went through more than her share of struggles.

A longtime HIV patient, she began suffering severe health problems in June 2016, when a persistent skin condition became debilitating. Her attempts to have surgery for the condition at Queen Elizabeth Central Hospital in Blantyre, Malawi’s second-largest city, failed. Twice, she was unable to have surgery because the surgeon wasn't there; a third time, the hospital did not have blood available in case she needed a transfusion. Travel to the hospital was long and difficult.

Because of her condition and associated stigma, Kapeni’s husband left her and much of her family abandoned her. As money ran short, Kapeni almost gave up on having the surgery.

When staff with PIH—known locally as Abwenzi Pa Za Umoyo—visited her home last September, they found Kapeni bedridden, essentially unable to move.

The PIH clinical officer visited Kapeni to find out why she was missing follow-up appointments for HIV. Kapeni had been dedicated to antiretroviral therapy (ART) since 2014, so it was concerning that she was not taking her medication, and was missing checkups.

The clinical officer discovered that Kapeni was no longer able to leave her home due to the skin condition, which by that time she had been living with for more than four years. Her HIV viral load was very high. She and her children lived in a small, crumbling structure with no solid walls, an incomplete thatched roof, and very limited food. Her condition made it painful for Kapeni to sit, or even to move. Motorbike rides to visit health facilities had become too painful.

An unstable hut with plastic bags and sacks as walls
When PIH clinical staff visited Rose Kapeni in September, they found her bedridden in this unstable home, suffering from a debilitating skin condition and struggling to care for her children. (Photo by Mark Chalamanda / Partners In Health)

PIH’s clinical HIV team quickly mobilized, along with community health workers and the program on social and economic rights, or POSER, which addresses social and economic causes of poor health. The close coordination between all those teams ensured Kapeni quickly got comprehensive care, and soon resumed her ART.

POSER staff provided a large bag of maize, along with emergency financial support for her hospital stay. POSER also coordinated transportation to Neno District Hospital, where, at the end of September, PIH’s medical director and a visiting surgeon successfully conducted Kapeni’s long-awaited surgery, fixing her condition. Her community health worker, Ida Simion, cared for Kapeni’s three children while she was hospitalized.

Recovering at the Neno hospital last fall, Kapeni explained that throughout her ordeal, her only strength had come from her children: her son, 9, and two daughters, 6 and 2. All three children are HIV-negative. Kapeni knew she had to be there for them, so she persevered through the pain and stigma.

“Problems come to anyone in life, and you just have to stay strong,” she said.

After four weeks in the hospital, Kapeni returned to her home in Tiyese Village and, finally, began the long process of starting anew. Her vitality was evident in December, when Kapeni buzzed with energy while visiting PIH’s main office in Neno. She laughed as she talked with staff, joking and carrying herself with a renewed confidence.

She and her children now have an additional source of strength.

Rose, her children, PIH staff and community members stand in front of a newly constructed brick house
Rose Kapeni, center and holding her three children, receives the key to her new home during a joyous ceremony Feb. 7 in Neno District, Malawi. The ceremony and new home, funded by a private donor, culminated a long, grueling period of illness, recovery and resilience for Kapeni and her children. (Photo by Elise Mann / for Partners In Health)

The POSER team worked with the community and Kapeni’s family to buy land for a new home. POSER had built 109 homes in Neno District since PIH’s arrival in 2007, and it was clear that the 110th could be for Kapeni, if funding could be found. Thankfully, a private donor provided money for the permanent, two-bedroom home for Kapeni and her children.

John Living Munthali, infrastructure manager for PIH in Malawi, said construction of the home started in December and took six weeks. Crews molded bricks right on the site, nestled in a small community in Neno's Matandani area.

“We believe that treatment alone is not enough,” said Victor Kanyema, POSER program manager. “Working in collaboration with clinical teams, we make life better for all the people we serve in Neno.”

*Name changed

Article originally posted on pih.org


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Read more about how PIH is fighting poverty and tacking the social determinants of health, providing agricultual support to families in Rwanda to help them tackle food insecurity and generate an income. 

Posted on: Thursday, February 28th, 2019

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