Emily Onjile was young when she started experiencing symptoms such as dry throat, fatigue, shortness of breath and weakness.
The health care workers treating her believed that these symptoms were indicative of rheumatic fever, a condition called rheumatic heart disease that would eventually cause permanent damage to her heart valves. Neither did I.
Rheumatic fever is a disease that develops when a sore throat caused by bacteria is not properly treated.

Rheumatic heart disease is permanent damage to the important heart valves that control blood flow, damage caused by rheumatic fever.
“I am a patient of rheumatic heart disease. I feel very weak. I am not doing anything. I can’t even cook. My sisters are helping me now,” said the 34-year-old. Mr. Onjiru, who is 20 years old, told reporters.
She was at her home in Masanafu, a densely populated slum 10 kilometers from Kampala city centre.

The mother of four said her symptoms worsened with age.
Her condition worsened further in 2019, but this was also an opportunity for her to discover the exact disease that was afflicting her.
“I was in critical condition. So I was rushed to the hospital. They discovered this condition when they examined my heart. They discovered that two valves in my heart had already been eaten away by bacteria. “That’s what the doctor told me,” she recalls.

She said doctors at the Uganda Heart Institute (UHI) immediately recommended surgery as a permanent solution, but they were unable to raise funds and her condition worsened.
“They (doctors) said it was more than Sh27 million so there was nothing to do. I just kept quiet about it. I thought I would never get this money. “It’s possible. My husband doesn’t have anything either. I know what kind of work he does. So it wasn’t easy for us,” she added.

The mother of four said she buys drugs for about Sh150,000 every month.
“But if I forget to take it, I won’t even be able to walk because I have difficulty walking at heights right now. My whole body is constantly shaking and I feel like I’m going to fall,” she reveals.

Her husband, Coffee Etuka, who earns 450,000 shillings a month, says his family needs support from the public to help his wife undergo life-saving surgery.
“So I am now asking for the public’s help in saving my wife’s life. We now have four children. These children are so small that I cannot raise them alone. ” he demands.

heavy burden
Dr Emmy Okello, a cardiologist who leads the rheumatic heart disease (RHD) research collaboration at UHI, said the disease was very common in Uganda.
“So what’s happening is that this RHD is the second most common disease in the world. But it’s the most common form of heart disease among children and young people around the world. ” he says.
A 2019 study by Amy Seal and colleagues in Uganda found that “the overall prevalence of RHD in participants under 20 years of age was 2.5 percent.”

“Of 2,453 community-dwelling individuals screened, 2.45 percent had echocardiographic evidence of RHD, and 1.26 percent had definite RHD. The overall prevalence of RHD in participants younger than 20 years was 2.5%,” the report states.
Additionally, another 2017 study by Dr. Okello and colleagues found that 17% of RHD patients died within a year.
“Most deaths occurred within three months of onset of symptoms,” the report said.
In the advanced stages of RHD, people undergo surgery to replace damaged valves at a cost that many Ugandans cannot afford.

According to a 2015 report by WanZhu Zhang and colleagues in Uganda, “The minimum cost of a single valve replacement surgery in Uganda is $9,000 (approximately Sh32 million).” RHD is a disease of the poor; This is unaffordable for those affected, as the majority of patients live on less than $1 (Shs3,800) per day. ”

cause
Dr. Okello said the disease begins with a bacterial infection.
“This bacteria is called Streptococcus A. It is common in children between the ages of 5 and 15. This means that children attending schools, daycare centers and primary schools are sharing cups and are more likely to catch the flu. ” he explains.
“The Streptococcus A bacteria that initiates this process spreads easily where children are overcrowded, malnourished and where the homes they live in have poor ventilation,” he added.

He observed that infection usually presents with a sore throat.
“Most sore throats are caused by viruses. But in certain people, about half of them, they are caused by bacteria. When infected with bacteria, the body forms antibodies against the bacteria,” he says. explained.
Dr Okello continues: “But because there are certain similarities between this wall of bacteria and the body, there’s a certain kind of collateral damage. The body sends antibodies against the bacteria, but ultimately it’s not in its own tissues. It will damage it.”

“The things most affected are the heart, the joints, and the brain. So in a classic setting, you end up with a child who has rheumatic fever early on. They have a fever, their joints hurt, and it affects the brain. “We see changes in the child’s behavior because of the effects of the disease, and over time the heart valves become damaged and the child begins to develop heart failure,” he added.
According to experts, this disease occurs like most of the common causes of fever in our environment, which is why many people delay getting the correct diagnosis.

“So people [health workers] Don’t miss this and think it’s poorly treated malaria, influenza, or some other illness. Brain and knee involvement are resolved. But it doesn’t solve the problem of the heart,” he says.
“It comes back silently, and the heart valves get damaged. Then these kids show up at the hospital with swollen legs, trouble breathing, and heart failure. That’s when health care workers “We woke up and said this child has heart failure. But this story would have started five to 10 years ago,” he added.

“In the early stages, a combination of penicillin, such as Pen-V or benzathine, and aspirin is enough to get the child back to normal. We now know that this is an early stage called subclinical or subclinical rheumatic heart disease. “We developed this in Uganda after learning that it happens in Uganda,” says Dr. Okello.
Through research collaborations at UHI, a consortium of national and international researchers focused on reducing the burden of RHD, children are being tested for early detection and treatment of RHD symptoms.