– Misdiagnoses, underreporting and research limitations harm both the vulnerable population and the people trying to make a difference
When I was admitted to Dr Balwant Singh’s Hospital in October 2009, my doctor thought that I had a stroke. The night before, my body hit its breaking point. For months, I had been living with a headache that would not go away and, as a result, I had taken a nap earlier in the evening, hoping to get some rest before doing my homework. Around 11:00 pm, though, I woke with a start because my headache had transformed into an immensely painful downward pressure, as if the world had flipped and suddenly, like the Titan Atlas, I was cursed to bear the weight of the sky on my head and shoulders.
Before that night, the headache would be a dull incessant throbbing that sometimes got worse and sometimes went away completely. None of the doctors I went to could figure out what was happening to me. I endured X-rays, MRIs and CAT-scans. I downed Paracetamol, Excedrin and Ibruprofin – pills that gave me only temporary relief if any. I changed my diet because a family friend suggested that I may be allergic to foods like corned beef or Vienna sausages with their high preservative content. In desperation, I even visited a neurologist who thought that I was simply depressed. The anti-depressants made me gain about 50 pounds in three months, and the painkillers he prescribed sent phantom creepy crawlies scuttling up and down my legs, but they never managed to take the headache away.
When at last my headache blossomed into something far more serious, I got lucky that this doctor didn’t rely solely on his original suspicion and ordered a round of blood tests to make sure that nothing else was wrong. Thankfully, one of the tests he did do was a dengue test. Within a few hours, I knew that his original suspicion was wrong. I did not have a stroke. I had something that was more immediately serious. The nurse assigned to me explained that I had dengue haemorrhagic fever caused by a dual dengue virus infection. I had to remain in the hospital for a few days. Ten years later, the gravity of all the misdiagnoses has finally hit me, and I can’t help but wonder how all my doctors got my diagnosis so wrong.
How doctors get it wrong
The answer to this question lies in both the dengue virus’s biology and the fact that in Guyana, dengue is one of the many neglected vector-borne tropical diseases whose seriousness is often downplayed because it is overshadowed by malaria and other more prominent tropical ailments.
Dengue, unlike malaria, is a viral, mosquito-borne disease that is endemic to Guyana. Only the Aedes aegypti and Aedes Albopictus mosquitoes spread dengue, and they may also carry the Chikungunya and Zika viruses as well. There are four strains of dengue found throughout Latin America and the Caribbean, but it is unclear which strains are present in Guyana. Currently, the range for the disease is Regions 2-6 along the coastal plains, but according to Dr Cassindra Alonzo, head of the Guyana Dengue Programme, there have been some reports of infected persons in Region 7, which shows that the disease’s range may be spreading inland.
Viral diseases are often deceptive with their symptoms because many of the disease’s signs resemble less dangerous ailments. If a person has an uncomplicated dengue infection, they may initially get a headache, feel fatigued and nauseous and may experience various bodily aches and pains, especially in their joints. These symptoms are frequently associated with the flu and many doctors tend to treat patients for these symptoms without running dengue tests. Doctors would give the patient a round of painkillers, send them home to rest and, if no complications arise, the patient will recover quickly and neither he nor his doctor would know that they were suffering from dengue.
Dr Alonzo therefore noted that dengue cases are only recorded in two instances. Firstly, the patient may be lucky to have a doctor who is more familiar with dengue and asks for tests to be done when they see the right symptoms. Secondly, a patient goes down on the record if they develop complications from dual-strain infections from repeated exposure to the disease, or if they lack resistance because they are foreigners or if they have some form of immunodeficiency. Even when complications arise, the possibility of dengue is often overlooked and treated as something else. These misdiagnoses can have lethal consequences.
On February 11, 2009, the country recorded its first dengue-related death of the season. Her name was Ji Caitao, and she was a 28-year-old Chinese national who was misdiagnosed multiple times by various private hospitals and treated for flu before a final private hospital diagnosed her with dengue haemorrhagic fever just like I was. Unfortunately, by then, it was too late. She, like me, has gone down in history as one of the over 1000 people who contracted the disease that year according to the Ministry of Health’s official record. However, since the disease is woefully undiagnosed, the actual number of dengue infections during that outbreak may be far higher. This trend, Dr Alonzo notes, continues to this day.
How lack of data access worsens Guyana’s dengue situation
The Dengue Programme was created shortly after the 2009 outbreak to find a way to eradicate the dengue-carrying mosquitoes as well as treat cases where they occur. The Programme cannot do this independently, of course, and relies on collaboration with doctors in hospitals across the country and with the Ministry of Public Health for the data it needs to fulfil its purpose.
Unfortunately, the Dengue Programme is not getting necessary disease statistics it needs to be effective. Hospitals usually send case reports directly to the Ministry of Public Health. There, the information is usually filtered before being sent to the various governmental or non-governmental organisations and programmes that need the information.
Dr Alonzo explained that this system is ineffective and hinders the programme. What should happen, she says, it that the hospitals should send their data to the Dengue Programme first before the data is transferred to the Ministry. In that way, they would have access to raw data that would tell them the number of incidences over time, where the majority patients are coming from and the type of dengue (complicated or uncomplicated) for which they are being treated. In this way, the programme can dispatch biologists and educators to the areas with the most cases to test to see which of the two mosquito sub-species are responsible for these cases, assess the environment for risks and educate residents about how they can reduce their risk of infection.
Unfortunately, they do not always have access to this information. Often, the programme director – Dr Alonzo in this case – would have to write to the Ministry to make a formal data request, which is a long and oftentimes fruitless bureaucratic process.
Dr Alonzo has tried to find a way around this problem by developing a dengue tool for hospitals to use. This tool gives doctors various criteria to look for to assess if a patient is showing signs of a dengue infection and gives them instructions on how to proceed with treatment and reporting. They are then supposed to return to tool directly to the Dengue Programme so that its staff can get some amount of data to carry out further study to help with the eradication programme. In the two years that the tool has been created and distributed, however, no hospital has yet returned theirs.
Children are the new hope
Without access to as much data as they need, the Dengue Programme’s research is stifled. However, they are still trying to reach out to the public – especially to young people – to educate them about dengue and how they can work within their communities to prevent the disease’s spread. May 6 – 12 is Caribbean Mosquito Awareness Week and Dr Alonzo and her team plan to collaborate with various GOs and NGOs to host a range of activities. Her team plans to target primary schools with events such as an awareness walk, a community clean up and school visits. There, students can play educational games like Larvae and Ladders – a variation on the traditional Snakes and Ladders – where students must answer questions about mosquitoes, vector-borne diseases and prevention methods to advance in the game and win a prize. They also plan to make several television and radio appearances to drive the message further.
Even though they do not have enough data and resources to implement a more scientific eradication programme at present, they hope that by promoting social changes from a young age, they may be able to eradicate dengue through a more grass-roots, community-wide effort. Children are their new hope in this regard as they hope that they would educate their parents with their newfound knowledge as well.
Dengue is easily preventable and is easy to diagnose. An educated population can help to eradicate the disease through their actions and save lives by identifying the symptoms early and insisting that they get the tests and treatments they deserve. Hopefully, through these efforts, dengue will cease being one of Guyana’s neglected tropical diseases.
This article was written and submitted in partial fulfilment of the requirements for the Degree of Bachelors of Science in Communications Studies. It was specifically written as a part of the course content for the DPC3209 – Reporting and Writing: Specialised Journalism: (Science, Health, Climate Change and Environment) and was submitted to my lecturer, Carinya Sharples, on April 20th, 2019.
It was later adapted and printed in the 2019 edition of The Guyana Annual and then posted on this blog. It was later nominated for a PAHO Media Award in December 2019 in the Online Journalism category.
Image taken from Wikipedia commons.