By Innocent Kiiza
Kasese, Uganda – Standing outside her modest home in western Uganda, Immaculate Muhindo, 37, gazes at the hills that stretch along the Equator. A mother of five—two of whom live with sickle cell disease—she understands not only the physical toll of the illness, but also the emotional weight of stigma and climate vulnerability.
“When I gave birth to my first daughter as a teenager, it was a moment of pure joy,” she recalls. “She looked healthy, always smiling. Friends and neighbors came to congratulate me. I was just like any other mother—happy, hopeful.”
But the joy was short-lived. At age two, her daughter began to suffer from painful joint swelling and frequent crying. Medical tests confirmed sickle cell disease (SCD), a chronic condition that would come to define their lives.
“I was surprised and afraid,” says Immaculate. “But the doctors gave me hope. They said she could live a full life if I followed their advice.”
Determined to give her child that chance, she embraced a strict care routine: a balanced diet rich in vegetables, constant hydration, and protective measures against weather extremes. With her vigilance, her daughter completed nursery and primary school with relatively few complications, except for severe bouts of malaria.
Weather, the Invisible Enemy
Living in Kasese, a district prone to erratic weather—scorching heatwaves followed by heavy rainfall—poses additional risks. Medical advice has warned Immaculate that both excessive heat and cold could trigger sickle cell crises, potentially leading to hospitalization or worse.
“Too much sunshine leads to dehydration, which can block blood vessels and cause serious pain,” she explains. “Cold weather is no better—it makes children urinate and sweat more, losing fluids. If they don’t drink enough water, they suffer.”
These weather swings are increasingly dangerous in Uganda’s highlands, where climate extremes are intensifying due to global warming.
“One doctor told me that dehydration—whether from heat or cold—can lead to swelling, joint pain, and even strokes,” Immaculate adds.
The Weight of Stigma
Tumusiime Kiconco, 32, another mother in Kasese, shares a similar journey. Her son also lives with SCD.
“I always make sure he carries enough fluids to school, especially during extreme sunshine,” she says. “But what breaks my heart is the discrimination.”
One day, her son returned from school in tears after classmates mocked him for having “yellow eyes”—a common symptom of sickle cell. He was ostracized, made to feel ashamed for something beyond his control.
“Teachers don’t always understand sickle cell,” she says. “As a parent, you have to do everything—protect from malaria, ensure warm clothes, and constantly remind them to drink water.”
She has built her son’s routine around climate adaptation and infection prevention. But stigma often feels like the heaviest burden.
“Some children are told not to play with him, as if SCD is contagious,” she adds. “Even some teachers don’t understand this illness.”
Climate Stress and a Child’s Pain
Kiconco’s teenage son, Richard Tumwebaze (not his real name), lives with the daily struggle.
“During cold seasons, I wake up weak. My joints hurt. Sometimes I miss school because I’m just too sick,” he says, bundled in heavy clothes even when others wear T-shirts. “When it’s too hot, I get headaches and feel dizzy.”
His mother does her best to shield him from triggers—packing juice and water, using mosquito nets to prevent malaria, and urging him to avoid harsh sunlight. But the mix of climate instability and social stigma takes a toll.
What the Experts Say
According to Dr. Deogratias Munube, a pediatric hematologist with over 15 years of experience treating children with SCD, Uganda’s rising temperatures and extreme weather patterns are exacerbating health risks.
“Temperatures below 35°C and above 38°C can trigger complications,” he explains. “Heat causes dehydration, which worsens sickling of red blood cells. Cold weather slows blood flow and increases infections.”
He has observed a clear rise in hospital admissions during dry and rainy seasons, noting cases of acute pain, pneumonia, and severe anemia among children with SCD.
Shubaya Kasule Naggayi, a neuropsychologist at Mulago’s sickle cell clinic, highlights the psychological toll.
“Frequent crises disrupt schooling. Caregiver stress increases. Sometimes, families break apart under the burden,” she says. “Poor air quality from climate change worsens complications like acute chest syndrome.”
A Double Burden: Illness and Inequity
In a country with limited healthcare infrastructure, families like Immaculate’s face compounded challenges.
“We have national guidelines for SCD management,” says Dr. Munube, “but many health workers still lack training in specialized care.”
Naggayi adds that national climate adaptation policies often ignore the intersection of chronic illness and environmental stressors.
“Most interventions focus on malaria or waterborne diseases. SCD is overlooked in climate health policy,” she says.
Mothers as Frontline Fighters
Despite these gaps, mothers like Immaculate and Kiconco remain the first and last line of defense.
“When it rains, I make sure they sleep warm. When it’s hot, I remind them to drink water,” says Immaculate. “But I can’t control the weather.”
Kiconco hopes for a future where teachers are trained, communities are informed, and climate-sensitive policies address the real needs of children with chronic conditions.
“My child deserves to go to school without fear, without being judged for a disease he didn’t choose,” she says.
As Uganda faces rising temperatures, unpredictable rainfall, and frequent heatwaves, families raising children with SCD stand at a dangerous intersection—where an inherited disease meets a changing planet.
“Sickle cell was already hard,” Immaculate says. “Now, climate change is making it harder.”
What Must Change?
Dr. Munube calls for a shift in national priorities.
“Parents must be trained on home-based care. Policymakers must allocate resources for detection, prevention, and treatment. And the public must be educated—because stigma can kill too.”
As global temperatures rise, so must awareness, funding, and support—especially for those fighting on the frontlines of both health and climate.
For mothers like Immaculate and Kiconco, every day is a delicate balancing act. But for now, they keep going—carrying not only their children’s pain, but their hopes.
