Surgeons in the theatre at Uganda Heart Institute (UHI). PHOTO/FILE
Emily Onziru was still young when she started experiencing episodes of dry throat, fatigue, shortness of breath, and body weakness.
It didn’t cross the minds of the health workers treating her that these symptoms were suggestive of rheumatic fever which eventually caused permanent damage to her heart valves, a condition termed as rheumatic heart disease.
Rheumatic fever is a disease that develops when a sore throat caused by bacteria is not treated properly.
Rheumatic heart disease is the permanent damage of essential heart valves that control the blood flow, a damage which results from rheumatic fever.
“I am a rheumatic heart disease patient. I’m feeling very weak. I don’t even do anything. Even cooking, I cannot do. It is my sisters who help me now,” Ms Onziru, now 34, narrates to our reporter.
She was at her home in Masanafu, a densely populated slum, 10 kilometres away from Kampala City centre.
The mother of four says her condition got worse with age.
In 2019, her condition deteriorated further but this was also an opportunity for her to discover the exact disease disturbing her.
“I was in critical condition. So, I was rushed to the hospital. They discovered the condition when they checked the heart. They found that the two valves of my heart were already eaten up by bacteria. That was the doctor’s explanation,” she recalls.
She says the doctor at Uganda Heart Institute (UHI) immediately recommended surgery as a permanent solution but she has failed to raise the money, making her condition deteriorate further.
“They (the doctors) said it was Shs27 million plus, so there was nothing to do. I just kept quiet about it. I was like I cannot get this money. It’s not possible. Even my husband has nothing. I know the kind of job he does. So, it was not easy for us,” she adds.
The mother of four says she buys drugs for around Shs150,000 each month.
“But if I miss taking them, I cannot even walk because currently walking on a higher ground is a problem to me. I feel like I’m going to fall because the whole body is ever shaky,” she reveals.
Her husband, Coffee Etuka, who earns Shs450,000 a month, says his family needs support from the public to help his wife get the life-saving surgery.
“So, I’m now requesting the public to help me to save the life of my wife. We have four children right now. These children are so small, I cannot bring them up alone,” he requests.
High burden
Dr Emmy Okello, a heart specialist who is heading the Rheumatic Heart Disease (RHD) research collaboration at UHI, says the disease is very common in Uganda.
“So, what is happening is that this RHD worldwide is the second most common disease. But it is the most common form of heart disease worldwide among children and young adults,” he says.
A 2019 study report by Amy Scheel and colleagues in Uganda indicates that “the overall prevalence of RHD among participants less than 20 years old was 2.5 percent.”
“Of the 2,453 community members screened, 2.45 percent showed echocardiographic evidence of RHD with 1.26 percent having definite RHD. The overall prevalence of RHD among participants less than 20 years old was 2.5 percent,” the report reads.
Moreover, another 2017 study report by Dr Okello and colleagues found that of the patients with RHD, 17 percent die within one year.
“Most deaths occurred within three months of presentation,” the report reads.
Those with RHD, the advanced stage, are subjected to surgery to change the damaged valve at a cost that many Ugandans may not afford.
According to a 2015 report by WanZhu Zhang and colleagues in Uganda, the “minimum cost of a single valvular replacement surgery if done in Uganda is $9,000 (about Shs32 million). This is not affordable to the affected patients as RHD is a disease of the poor and the majority of patients live on less than $1 (Shs3800) per day.”
Cause
Dr Okello says the disease starts as a bacterial infection.
“The bacteria is called Strep A. It’s common in children between five and 15 years. So, you know, children who are going to school, nursery and primary school, they’re sharing cups, they have flu,” he explains.
“This Strep A bacteria which starts the process, spreads easily where children are overcrowded, malnourished and when the houses they live in are poorly ventilated,” he adds.
He observes that the infection usually manifests a sore throat.
“Most times sore throat is caused by a virus. But in certain people, about half of them, it’s caused by bacteria. When they’re infected with bacteria, the body forms antibodies against the bacteria,” he explained.
Dr Okello continues: “But then because there are certain similarities between the wall of this bacteria and the body, there is some sort of collateral damage. The body sends antibodies against the bacteria, but ends up damaging its own tissues.”
“The most affected is the heart, the joints, and then the brain. So, in a classical setting, you get a child who has early rheumatic fever. They have fever, the joints are painful, the child has behavioural changes because the thing is affecting the brain. Then over time, the heart valves get damaged and they start going into heart failure,” he adds.
According to the expert, many people delay to get the right diagnosis because the disease behaves like most of the common causes of fever in our environment.
“So people [health workers] miss this and think it is malaria, which is poorly treated, or flu, or other things. The involvement of the brain and the knees will resolve. But the one for the heart doesn’t resolve,” he says.
“It keeps coming back quietly. And then the heart valves get damaged. Then these children show up in hospital with swelling of the feet, they are not breathing well, there is heart failure. That’s when health workers wake up and say, this child is in heart failure. But the story would have started five to 10 years ago,” he adds.
“At an early stage, all you need is penicillin, like Pen-V or benzathine, with aspirin and the child will get back to normal. We have now known, and we have developed this in Uganda, that this thing happens in an early stage called latent or silent rheumatic heart disease,” Dr Okello says.
Through the research collaboration at UHI, which is a consortium of national and international researchers focused on reducing the burden of RHD, children are being screened so the condition can be detected early and treated.
