mbale, uganda — Barbara Nabulo was one of three girls in her family. But when a sister died, her mother wailed at the funeral that she was left with just one and a half daughters.

The half was the ailing Nabulo, who at age 12 understood her mother’s meaning.

“I hated myself so much,” Nabulo said recently, recalling the words that preceded a period of sickness that left her hospitalized and feeding through a tube.

The scene underscores the lifelong challenges for some people with sickle cell disease in rural Uganda, where it remains poorly understood. Despite Nabulo’s knowledge of how the disease weakens the body, she spoke repeatedly of “the germ I was born with.”

Infections, pain, organ damage

Sickle cell disease is a group of inherited disorders in which red blood cells — normally round — become hard, sticky and crescent shaped. The misshapen cells clog the flow of blood, which can lead to infections, excruciating pain, organ damage and other complications.

The disease, which can stunt physical growth, is more common in malaria-prone regions, notably Africa and India, because carrying the sickle cell trait helps protect against severe malaria. Global estimates of how many people have the disease vary, but some researchers put the number between 6 million and 8 million, with more than 5 million living in sub-Saharan Africa.

The only cure for the pain sickle cell disease can cause is a bone marrow transplant or gene therapies such as the one commercially approved by the U.S. Food and Drug Administration in December. Last week, a 12-year-old boy last week became the first person to begin the therapy.

Those options are beyond the reach of most patients in this East African nation, where sickle cell disease is not a public health priority despite the burden it places on communities. There isn’t a national database of sickle cell patients. Funding for treatment often comes from donor organizations.

A patient, a caregiver

In a hilly part of eastern Uganda that’s a sickle cell hot spot, the main referral hospital looks after hundreds of patients arriving from nearby villages to collect medication. Many receive doses of hydroxyurea, a drug that can reduce periods of severe pain and other complications, and researchers there are studying its effectiveness in Ugandan children.

Nabulo, now 37, is one of the hospital’s patients. But she approaches others like her as a caregiver, too.

After dropping out in primary school, she has emerged in recent years as a counselor to fellow patients, speaking to them about her survival. Encouraged by hospital authorities, she makes weekly visits to the ward that has many children watched over by exhausted-looking parents.

Nabulo tells them she was diagnosed with sickle cell disease at 2 weeks old, but now she is the mother of three children, including twins.

Such a message gives hope to those who feel discouraged or worry that sickle cell disease is a death sentence, said Dr. Julian Abeso, head of pediatrics at Mbale Regional Referral Hospital.

Some men have been known to divorce their wives — or neglect them in search of new partners — when they learn that their children have sickle cell disease. Frequent community deaths from disease complications reinforce perceptions of it as a scourge.

Health workers encourage testing

Nabulo and health workers urge openness and the testing of children for sickle cell as early as possible.

Abeso and Nabulo grew close after Nabulo lost her first baby hours after childbirth in 2015. She cried in the doctor’s office as she spoke of her wish “to have a relative I can call mine, a descendant who can help me,” Abeso recalled.

“At that time, people here were so negative about patients with sickle cell disease having children because the complications would be so many,” the doctor said.

Nabulo’s second attempt to have a child was difficult, with some time in intensive care. But her baby is now a 7-year-old boy who sometimes accompanies her to the hospital. The twin girls came last year.

Speaking outside the one-room home she shares with her husband and children, Nabulo said many people appreciate her work despite the countless indignities she faces, including unwanted stares from people in the streets who point to the woman with “a big head” — a manifestation of the disease in her. Her brothers often behave as if they are ashamed of her, she said.

Once, she heard of a girl in her neighborhood whose grandmother was making frequent trips to the clinic over an undiagnosed illness in the child. The grandmother was hesitant to have the girl tested for sickle cell when Nabulo first asked her. But tests later revealed the disease, and now the girl receives treatment.

“I go to Nabulo for help because I can’t manage the illness affecting my grandchild,” Kelemesiya Musuya said. “She can feel pain, and she starts crying, saying, ‘It is here and it is rising and it is paining here and here.'”

Musuya sometimes seeks reassurance. “She would be asking me, ‘Even you, when you are sick, does it hurt in the legs, in the chest, in the head?’ I tell her that, yes, it’s painful like that,” Nabulo said.

Nabulo said she was glad that the girl, who is 11, still goes to school.

The lack of formal education is hurtful for Nabulo, who struggles to write her name, and a source of shame for her parents, who repeatedly apologize for letting her drop out while her siblings studied. One brother is now a medical worker who operates a clinic in a town not far away from Nabulo’s home.

“I am very happy to see her,” said her mother, Agatha Nambuya.

She recalled Nabulo’s swelling head and limbs as a baby, and how “these children used to die so soon.”

But now she knows of others with sickle cell disease who grew to become doctors or whatever they wanted to be. She expressed pride in Nabulo’s work as a counselor and said her grandchildren make her feel happy.

“At that time,” she said, recalling Nabulo as a child, “we didn’t know.”
…

…

BEIJING — Cases of bird flu have been confirmed among wild fowl in western China, the agriculture ministry said Saturday, as concerns grow over a U.S. outbreak infecting cattle. 

Two counties in Qinghai province confirmed 275 cases of H5 influenza among dead Pallas’s gull and other wild birds, China’s Ministry of Agriculture and Rural Affairs said in a notice on its website. 

The ministry received a report on the cases from the China Animal Disease Control Center, and the national Avian Influenza Reference Laboratory confirmed the finding, the notice said. 

The H5N1 outbreak among dairy cattle in at least nine U.S. states since late March has raised questions over whether it could spread to humans. No such cases have been reported. 

The U.S. announced on May 11 that it would spend close to $200 million to fight the outbreak. 

News of the China bird flu cases came as the nation’s anti-graft watchdog announced a corruption probe of the agriculture minister Saturday. 

Tang Renjian, 61, is under investigation for “serious violations of discipline and law” by the Central Commission for Discipline Inspection and National Supervisory Commission, CCDI said on its website. 

The term is CCDI’s typical euphemism for corruption. 

The notice gave no further details. 
…

NEW DELHI — Parts of northwest India sweltered under scorching temperatures Saturday, with the capital, New Delhi, under a severe weather alert as extreme temperatures struck parts of the country.

India’s weather department expects heat wave conditions to persist across the north for the next few days and has put several states on high alert.

On Friday, parts of New Delhi reported up to 47.1 degrees Celsius (116 Fahrenheit). The nearby states of Punjab, Haryana and Rajasthan also saw temperatures soar; they are likely to stay high over the next few days, said Soma Sen Roy, a scientist at the India Meteorological Department.

Roy cautioned people against going outdoors under the afternoon sun. He advised drinking plenty of water and wearing loose-fitting clothes. Those who are especially vulnerable, such as the elderly, should stay indoors, he said.

The extreme temperatures coincide with a six-week-long general election, with experts worried that the heat wave could increase health risks as people wait in long lines to cast their vote or candidates campaign aggressively in the outdoors. One minister fainted due to heat last month while addressing an election rally in Maharashtra state.

Prime Minister Narendra Modi and his main challenger, Rahul Gandhi of the opposition Congress Party, were expected to hold rallies in New Delhi later Saturday, as the city heads to the polls on May 25.

Satish Kumar, a 57-year-old rickshaw driver in the capital, said his work was suffering because of the heat. “People are not coming outside, [markets] are nearly empty,” he said.

Pravin Kamath, a 28-year-old who runs a cart selling cold drinks, complained that it was so hot he could hardly stand being outdoors. “But I must work. What can I do? I am poor, so I have to do it.”

The main summer months — April, May and June — are always hot in most parts of India before monsoon rains bring cooler temperatures. But the heat has become more intense in the past decade and is usually accompanied by severe water shortages, with tens of millions of India’s 1.4 billion people lacking running water.

A study by World Weather Attribution, an academic group that examines the source of extreme heat, found that a searing heat wave in April that struck parts of Asia was made at least 45 times more likely in some parts of the continent by climate change.

Climate experts say extreme heat in South Asia during the pre-monsoon season is becoming more frequent and the study found that extreme temperatures are now about 0.85 C (1.5 F) hotter in the region because of climate change.

At least 28 heat-related deaths were reported in Bangladesh, as well as five in India, in April. Surges in heat deaths have also been reported in Thailand and the Philippines this year, according to the study.

Extreme heat is fast becoming a public health crisis in India, with more than 150 people dying last year during heat waves. The government estimates nearly 11,000 people have died during heat waves this century, yet experts say such figures are likely a vast undercount.
…

…

LONDON — A scenic fishing village in southwestern England was under instructions to boil its tap water for a third day on Friday after a parasite sickened more than 45 people in the latest example of Britain’s troubled water system.

Around 16,000 homes and businesses in the Brixham area of Devon were told to boil water after cryptosporidium, a microscopic parasite that causes diarrhea, was found in the water. At least 46 cases of cryptosporidiosis have been confirmed and more than 100 other people have reported similar symptoms, the U.K. Health Security Agency said. Symptoms can last more than two weeks.

Sally Dart, who runs a housewares shop near Brixham Harbor, said people in town first began feeling ill two weeks ago during a pirate festival.

“No one was checking the quality of the water, and we’ve all got sick and it’s stupid,” she said. 

South West Water’s Chief Executive Susan Davy apologized for the outbreak and said technicians were working around the clock to identify and fix the problem that may have come from a pipe in a cattle pasture.

“I am truly sorry for the disruption and wider anxiety this has caused,” Davy said. “I know on this occasion we have fallen significantly short of what you expect of us.”

The crisis is unrelated to Britain’s larger ongoing water woes but emblematic of an aging system in distress.

Water companies have been under fire for more than a year to stop frequent sewage overflows into rivers and oceans that have literally caused a stink, sickened swimmers, polluted fishing streams and led to an outcry from the public to clean up their act.

An environmental group this week reported that 70,000 sewage releases spilled for a total of 400,000 hours along England’s coast last year. More than a quarter were within 3.2 kilometers of a swimming spot, Friends of the Earth said in its analysis of government data.

Clean water advocates have blamed the problems on Britain’s privatization of the water system in 1989. They say that companies have put shareholders ahead of customers and not spent enough to update outdated plumbing systems.

Thames Water, the largest of the companies, is on the brink of insolvency and its leaders have said it faces the risk of being nationalized after shareholders refused to inject more cash.

Earlier this week, in another sign of problems, millions of gallons of raw sewage were pumped into England’s largest lake. After a fault caused pumps to fail, backup systems then pumped human waste into Lake Windermere, a UNESCO World Heritage site, for 10 hours, the BBC reported.

The cryptosporidiosis outbreak is hardly the first time South West Water has encountered problems, according to authorities.

The company is facing charges in Plymouth Magistrates’ Court alleging 30 offenses for illegal water discharges or breaches of environmental permits between 2015 and 2021, the Environment Agency said.

The recent outbreak appears to come from a damaged air valve in a pipe that runs through a field where cows graze that is close to a reservoir, said Laura Flowerdew, a spokesperson for South West.

With word out about the outbreak, Dart said her business is down by about a third and other merchants complained about a loss of income as warmer weather arrives and a holiday weekend is just a week away.

“I would say it’s quiet and it shouldn’t be at this time of year,” Dart said.

A primary school was forced to close Thursday because it didn’t have clean drinking water. The water company is providing free bottled water at three locations and has increased compensation to customers from 15 pounds ($19) to 115 ($145).

Paul Hunter, a professor in medicine at the University of East Anglia, said it’s likely more people will become ill with cryptosporidiosis in coming days or weeks because of a lag in the incubation period.

“Even if they have stopped all new infections by now, you would expect to see further cases for at least 10 days to two weeks,” he told the BBC.

Anthony Mangnall, a Conservative member of Parliament from the area, said residents are likely to have to boil water for another week. He said he was concerned with the water company’s response to the outbreak and vowed to hold it accountable.

“They have been slow to act and communication with customers has been very poor,” Mangnall said. “This has certainly undermined trust in our water network.”
…

The effects of recent extreme weather in Southeast Asian countries are far-reaching, from school closures to drought and health advisories. While climate change is part of the problem, this year it was made worse by the cyclical weather pattern called El Nino. VOA’s Chris Casquejo explains.
…

SYDNEY — Australian scientists say they have discovered how an enzyme “hidden in nature’s blueprint” could help develop climate-resilient crops able to remove more carbon dioxide from the atmosphere. 

An Australian study, by researchers from Australian National University and the University of Newcastle in New South Wales, focuses on a type of bacteria researchers call “tiny carbon superheroes.” 

Cyanobacteria, a type of algae-like bacteria also called blue-green algae, are found in fresh and coastal waters, as well as oceans.  They are commonly known for their toxic blooms in lakes and rivers.  

Through the process of photosynthesis, Australian scientists say, they capture about 12% of the world’s carbon dioxide each year. 

Their study says a carbon dioxide-concentrating mechanism in cyanobacteria lets them turn atmospheric carbon dioxide into sugars for cells to eat more quickly than most standard plants and crops.

Until now, the Australian team was unaware how critical an enzyme in cyanobacteria, called carboxysomal carbonic anhydrase, was to the process. The study says the mystery of how the enzyme maximizes the cyanobacteria’s ability to extract atmospheric carbon dioxide has been solved.

Ben Long, a senior lecturer in molecular plant biology at Australia’s University of Newcastle and is the study’s lead author.

He told VOA that the aim is to engineer crops that can absorb more greenhouse gases.   

“We are actually interested in utilizing this CO2-concentrating mechanism from cyanobacteria, which we know is a remarkably efficiently system for capturing CO2 and we want to engineer that into plant cells to make plant cells able to capture CO2 far more effectively and efficiently,” Long said.

The research says that engineered plants that are more efficient at capturing carbon dioxide could increase crop yield, making global food systems that are more resilient to climate change. 

Long says the findings should be part of international efforts to reduce greenhouse gases.  

“Every technology has to be brought to bear to try to reduce CO2 emissions and reduce CO2 in the atmosphere and I think to date we have not really focused much on those potential biological applications to reduce greenhouse gas emissions,” Long said.

The study has been published in the journal Science Advances.
…

In Africa, about 15% of the population faces disability challenges despite advancements in technology. Limited infrastructure and high cost of assistive tech create barriers to digital access, leading to exclusion. A conference in Nairobi this week aims to help change that. Mohammed Yusuf reports.
…

…

CAPE CANAVERAL, FLORIDA — The Webb Space Telescope has discovered the earliest known merger of black holes.

These two gigantic black holes and their galaxies consolidated just 740 million years after the universe-forming Big Bang. It’s the most distant detection ever made of merging black holes, scientists reported Thursday.

One black hole is 50 million times more massive than our sun. The other is thought to be similar in size, but is buried in dense gas, which makes it harder to measure.

Until now, astronomers weren’t sure how supermassive black holes got so big.

The latest findings, published in the Monthly Notices of the Royal Astronomical Society, suggest mergers are how black holes can grow so rapidly — “even at cosmic dawn,” said lead author Hannah Ubler of the University of Cambridge.

“Massive black holes have been shaping the evolution of galaxies from the very beginning,” Ubler said in a statement.

Launched in 2021 as the eventual successor to NASA’s Hubble Space Telescope, Webb is the biggest and most powerful observatory ever sent into space. A joint U.S.-European project, the infrared observatory surveys the universe from a location 1.6 million kilometers from Earth.
…

…

NEW YORK — The number of fatal overdoses in the U.S. fell last year, according to Centers for Disease Control and Prevention data posted Wednesday.

Agency officials noted that the data is provisional and could change after more analysis, and that they still expect a drop when the final counts are in. It would be only the second annual decline since the current national drug death epidemic began more than three decades ago.

Experts reacted cautiously. One described the decline as relatively small and said it should be thought of as part of a leveling off rather than a decrease. Another noted that the last time a decline occurred — in 2018 — drug deaths shot up in the years that followed.

“Any decline is encouraging,” said Brandon Marshall, a Brown University researcher who studies overdose trends. “But I think it’s certainly premature to celebrate or to draw any large-scale conclusions about where we may be headed long term with this crisis.”

It’s also too soon to know what spurred the decline, Marshall and other experts said. Explanations could include shifts in the drug supply, expansion of overdose prevention and addiction treatment, and the grim possibility that the epidemic has killed so many that now there are basically fewer people to kill.

CDC Chief Medical Officer Dr. Debra Houry called the dip “heartening news” and praised efforts to reduce the tally, but she noted that “there are still families and friends losing their loved ones to drug overdoses at staggering numbers.”

About 107,500 people died of overdoses in the U.S. last year, including American citizens and noncitizens who were in the country at the time they died, the CDC estimated. That’s down 3% from 2022, when there were an estimated 111,000 such deaths, the agency said.

The drug overdose epidemic, which has killed more than 1 million people since 1999, has had many ripple effects. For example, a study published last week in JAMA Psychiatry estimated that more than 321,000 U.S. children lost a parent to a fatal drug overdose from 2011 to 2021.

“These children need support” and are at a higher risk of mental health and drug use disorders themselves, said Dr. Nora Volkow, director of the National Institute on Drug Abuse, which helped lead the study. “It’s not just a loss of a person. It’s also the implications that loss has for the family left behind.”

Prescription painkillers once drove the nation’s overdose epidemic, but they were supplanted years ago by heroin and more recently by illegal fentanyl. The dangerously powerful opioid was developed to treat intense pain from ailments such as cancer but has increasingly been mixed with other drugs in the illicit drug supply.

For years, fentanyl was frequently injected, but increasingly it’s being smoked or mixed into counterfeit pills.

A study published last week found that law enforcement seizures of pills containing fentanyl are rising dramatically, jumping from 44 million in 2022 to more than 115 million last year.

It’s possible that the seizures indicate that the overall supply of fentanyl-laced pills is growing fast, not necessarily that police are whittling down the illicit drug supply, said one of the paper’s authors, Dr. Daniel Ciccarone of the University of California, San Francisco.

He noted that the decline in overdoses was not uniform. All but two of the states in the eastern half of the U.S. saw declines, but most Western states saw increases. Alaska, Washington and Oregon each saw 27% increases.

The reason? Many Eastern states have been dealing with fentanyl for about a decade, while it’s reached Western states more recently, Ciccarone said.

Nevertheless, some researchers say there are reasons to be optimistic. It’s possible that smoking fentanyl is not as lethal as injecting it, but scientists are still exploring that question.

Meanwhile, more money is becoming available to treat addiction and prevent overdoses, through government funding and legal settlements with drugmakers, wholesalers and pharmacies, Ciccarone noted.

“My hope is 2023 is the beginning of a turning point,” he said. 
…

…

A groundbreaking clinical trial is underway in South Africa, marking a pivotal moment in the fight against tuberculosis. The new vaccine could become the first to help prevent pulmonary TB, the most common form of the disease, in adolescents and adults. It would be the first new TB vaccine in more than a century. Zaheer Cassim has the story.
…