WINDHOEK – Joseph Nashilongo was 11-years-old when he was diagnosed with Rheumatic heart disease, that has become a major public health concern and a cost burden to government.
Today, 19-year-old Nashilongo who is a Rheumatic heart disease ambassador- a patient-driven programme advocates for the health needs of people living with this heart condition through the Ministry of Health and Social Services.
He also shares information with his family and people in his community on how to prevent Rheumatic heart disease.
Rheumatic heart disease is a complication of rheumatic fever, in which the heart valves are damaged.
Rheumatic fever is an inflammatory disease that begins with strep throat.
A strep throat is a sore throat with fever caused by streptococcal infection.
It can affect connective tissue throughout the body, especially in the heart, joints, brain and skin.
Although rheumatic fever can affect people of all ages, it is most common in children between five and 15-years-old.
As a child, Nashilongo suffered from a sore throat, which was not treated, he recalls.
“I used to get sore throat as a child. The doctors told me that’s where the problem came from. If you experience a sore throat, go to the hospital immediately because it might be the same problem as mine developing,” the soft-spoken Nashilongo warned.
Years after the episodes of untreated sore throats had passed, Nashilongo started experiencing pain in his joints and ribs eight years ago, at the age of 11.
The pain was so severe that he struggled to sleep at night. This prompted his mother to seek medical attention at a health facility in Tsandi in the Omusati Region where he comes from.
That did not help because all he got was painkillers to stop the pain, Nashilongo said.
His mother decided to take him to a health facility at Outapi, where he also received painkillers but because the pain persisted, he returned the next day with his mother and that was when he was referred to Oshakati.
“I was later transferred to Windhoek because the situation did not improve and I was told in Windhoek that I have a heart problem but I was not told immediately that it was Rheumatic heart disease,” said Nashilongo.
At the time, Nashilongo who was a Grade five learner, dropped out of school because he spent more time in hospital than at school.
After nearly nine months of experiencing severe pain, Nashilongo underwent his first operation on December 1, 2010. The operation was for an aortic valve replacement.
“My valve wasn’t functioning properly and that hindered the flow of blood,” Nashilongo explained.
He underwent another operation this year to replace the aortic valve, which was replaced eight years ago during the first operation, he explained.
“I was told that the valve was old and it had to be replaced,” he added. Because of his condition, Nashilongo is unable to do hard labour.
“I cannot clean and do hard work. I cannot run because I get tired too quickly. Even when I’m at the village, I don’t do anything because if I do, it will cause more damage.”
He is on a restricted diet, which prevents him from eating fatty food, carbonated drinks, caffeine and legumes, amongst others. Nashilongo has to go for follow-up visits at the hospital twice every month.
Also, he is required to seek medical attention immediately when he gets a cut or sore on any part of his body, no matter how small.
“The medicine I take makes my blood thinner, so when I bleed it doesn’t stop easily,” he says, while touching his arms.
“Sometimes you feel like life is not fair because others are doing things that you can’t do. It makes me feel really bad but we were encouraged that there is so much that we can do,” said Nashilongo.
He is currently doing his Grade 10, through NAMCOL and hopes to become a doctor or nurse in future.
“I want to help myself and also others in my condition,” he motivated of his career interest.
Part of his job as a Rheumatic heart disease ambassador, Nashilongo goes on social media where he encourages other people with the condition to maintain a positive attitude despite their challenges.
“This condition is very serious. If we are told not to do certain things, we should listen. Some people I meet at the hospital do not adhere to the doctors’ advice and that causes a lot of problems for them. I was also one of them because I used to run and do mountain hiking but that resulted in me going for a second operation,” said Nashilongo.
He further stressed that parents especially, need to take care of their children by being vigilant of their health and wellbeing.
“Some of the people do not take care of their children. They experience pains such as sore throat but they don’t take them to the hospital,” he said, warning that a sore throat and fever if untreated can result in Rheumatic heart disease.
Also at the hospital, some people complain that they do not have taxi money and stay away from their medical follow ups while others fail to adhere to their daily doses of their treatment, Nashilongo has observed.
“You find some people go far in the villages where there are no health facilities and they miss their follow-ups because of the distance,” added Nashilongo.
Nashilongo’s parents and siblings live in the north.
“If it was not for this problem, I would be in the north with them and I would be attending school there, but I live here with my uncle and cousin and they are very supportive of me. They do not allow me to do hard chores. My cousin cooks for me,” Nashilongo said.
Dr Jones Nghaamwa, a cardiothoracic, heart and lung surgeon at Windhoek Central Hospital and Lady Pohamba Hospital in Namibia, says Rheumatic heart disease is the most common acquired heart condition and the reason for heart surgery 90 percent of the time.
“Between 1990 and 2013, there has been a less than five percent decrease in the prevalence of Rheumatic heart disease. This reality reflects on many aspects of Namibian society, social development, health care, education, economy and specifically the continuously widening gap of income disparity,” said Nghaamwa.
Globally, the disease affects more than 30 million people and accounts for 300 000 deaths per year.
Developing countries have the highest prevalence with poor communities mostly affected.
As a result, over the decades, the developed world with all its resources paid little attention to Rheumatic heart disease.
Recent efforts by developing countries culminated in a new perspective, redirected priorities and ultimately the adoption of a new resolution by the 71st World Health assembly in Geneva.
“Death and disability caused by Rheumatic heart disease negatively affect communities and thwarts national development. Such morbidity and mortality is preventable,” said Nghaamwa.