When Emiliana Rodriguez was a little girl, she recalls watching friends play a nighttime soccer match when one of the players abruptly died on the pitch.
Unaware of what had transpired, Rodriguez, a native of Bolivia, developed a phobia of the dark and the “monster”—the silent killer known as Chagas—that she had been told only appears at night.
Chagas disease is a unique sort of illness that is spread by nocturnal insects. It is also known as the “silent and silenced disease” that infects up to 8 million people annually, killing 12,000 people on average.
Emiliana Rodriguez, 42, discovered she had to live with Chagas, a “monster,” after relocating to Barcelona from Bolivia 27 years ago.
“Night is when the fear generally struck. I didn’t always sleep well,” she admitted. “I was worried that I wouldn’t wake up from my sleep.”
Rodriguez had specific tests when she was eight years old and expecting her first child, and the results indicated that she carried the Chagas gene. She recalled the passing of her buddy and remarked, “I was paralyzed with shock and remembered all those stories my relatives told me about people suddenly dying.” “I wondered, ‘What will happen to my baby?’”
Rodriguez was prescribed medicine, though, to prevent the parasite from vertically transmitting to her unborn child. After her daughter was born, she tested negative. Elvira Idalia Hernández Cuevas, 18, was unaware of the Mexican silent killer until her 18-year-old son was diagnosed with Chagas.
Idalia, an eighteen-year-old blood donor from her birthplace near Veracruz, Mexico, had a positive diagnosis for Chagas, a disease caused by triatomine bugs, often known as vampire or kissing bugs and bloodsucking parasites, when her sample was tested.
In an interview with the Guardian, Hernandez stated, “I started to research Chagas on the internet because I had never heard of it.” When I read that it was a silent murderer, I became really afraid. I had no idea where to go or what to do.
She is not alone in this; a lot of people are ignorant of the diseases that these unpleasant bugs can spread. The term Chagas originates from Carlos Ribeiro Justiniano Chagas, a Brazilian physician and researcher who made the discovery of the human case in 1909.
Over the past few decades, reports of the incidence of Chagas disease have been made in Europe, Japan, Australia, Latin America, and North America.
Kissing bugs are mostly found in rural or suburban low-income housing walls, where they are most active at night when humans are asleep. The insect bites an animal or person, then excretes on the skin of the victim. The victim may inadvertently scratch the area and sever the skin, or they may spread the excrement into their mouth or eyes. This is how the T. cruzi infection is disseminated.
The World Health Organization (WHO) estimates that between 6 and 7 million people worldwide—roughly 8 million people in Mexico, Central America, and South America—have Chagas disease; the majority of these individuals remain oblivious to their illness. These estimates are provided by the Centers for Disease Control and Prevention (CDC). The persistent infection might be fatal if untreated. According to the Guardian, Chagas disease kills over 12,000 people year, “more people in Latin America than any other parasite disease, including malaria.”
Despite the fact that these bugs have been found in the United States—nearly 300,000 people are infected—they are not thought to be endemic.
While some people never experience any symptoms, the CDC notes that 20 to 30 percent experience gastrointestinal or heart problems that can cause excruciating pain decades later.
Furthermore, only 10% of cases are detected globally, which makes prevention and treatment exceedingly challenging.
Hernández and her daughter Idalia went to see a number of doctors in search of assistance, but all were also uninformed about Chagas disease and its management. “I was taken aback, terrified, and depressed because I believed my kid was going to pass away. Above all, Hernandez stated, “I was more anxious because I was unable to locate any trustworthy information.”
Idalia finally got the care she required after receiving assistance from a family member who was employed in the medical field.
“The Mexican government claims that the Chagas disease is under control and that not many people are affected, but that is untrue,” Hernández asserts. Medical practitioners misdiagnose Chagas disease for other heart conditions because they lack knowledge in this area. Most people are unaware that there is Chagas in Mexico.
The World Health Organization (WHO) has classified chagas as a neglected tropical disease, which means that the global health policy agenda does not include it.
Chagas is overlooked in part because, according to Colin Forsyth, a research manager at the Drugs for Neglected Diseases Initiative (DNDi), “it’s a silent disease that stays hidden for so long in your body… because of the asymptomatic nature of the initial part of the infection.”
Forsyth went on to say, “The people affected just don’t have the power to influence healthcare policy,” making reference to the impoverished communities. It’s kept hidden by a convergence of social and biological factors.
Chagas, however, is becoming more well recognized as it spreads to other continents and can also be transferred from mother to child during pregnancy or childbirth, as well as through organ and blood transfusions.
The main objective of the Chagas Hub, a UK-based facility founded by Professor David Moore, a doctor at the Hospital for Tropical Diseases in London, is to get “more people tested and treated, and to manage the risk of transmission, which in the UK is from mother to child,” according to Professor Moore.
Regarding the WHO’s 2030 aim for the eradication of the disease, Moore stated that progress toward it is “glacial” and added, “I can’t imagine that we’ll be remotely close by 2030.” That seems improbable.
Two medications that have been available for more than 50 years to treat chagas are benznidazole and nifurtimox, which according to Moore are “toxic, unpleasant, not particularly effective.”
Although the medications are effective in curing babies, there is no guarantee that they will prevent or halt the advancement of the condition in adults.
Regarding severe adverse effects, Rodriguez remembers getting dizziness and nausea as well as breaking out in hives. She completed her therapy, and she gets checked out annually.
Moore goes on to say that while creating stronger anti-Chaga drugs is crucial to stopping the disease’s spread, pharmaceutical companies are currently not financially motivated to do so.
As president of the International Federation of Associations of People Affected by Chagas condition (FINDECHAGAS), Hernández is on a mission to raise awareness of the condition until there is a greater need on the market for innovative treatments.
In Spain, Rodriguez is battling the “monster” as part of a campaign to increase public awareness of Chagas disease being conducted by the Barcelona Institute for Global Health.
“I’m tired of hearing nothing at all,” Rodriguez declares. “I want Chagas to be discussed and made public. I’m in favor of testing and therapy for individuals.
They are being heard, too.
World Chagas Disease Day was instituted by the WHO on April 14, 1909, the day Carlos discovered the disease’s first human case.The WHO states that “a diversified set of 20 diseases and disease categories are set out to be prevented, controlled, eliminated, and eradicated through global targets for 2030 and milestones.” And among them is Chagas.
To prevent a possible infestation, the CDC suggests taking the following steps:
Close up any gaps and fissures around doors, windows, walls, and roofs.
Clear out the rock, wood, and brush piles close to your home.
Put screens on windows and doors, and fix any tears or holes in them.
Close up gaps and crevices that lead to the exterior, crawl areas beneath the home, and the attic.
Keep pets inside, especially during the evening.
Maintain the cleanliness of your home and any outdoor pet resting places, and check for bugs on a regular basis.
If you believe you have discovered a kissing insect, the CDC recommends avoiding crushing it. Alternatively, carefully put the bug in a jar, fill it with rubbing alcohol, and then freeze it. It is then recommended that you bring the bug’s container to an academic lab or your local health authority so that it can be identified.
Please tell this tale to help spread the word about an illness that goes unnoticed!
A baby with a rare skin disorder is born after an urgent C-section by medical professionals.
Throughout the nine months of pregnancy, a mother’s heart is filled with anticipation, excitement, and a hint of doubt. When an expecting parent gives birth, they all want the child to be healthy and happy. Regretfully, our expectations are not always met by the way things work out.
Jennie Wilklow, of Highland, New York, was looking forward to meeting her daughter. Jennie and her spouse were overcome with happiness the moment they held their baby.
After multiple ultrasounds and check-ups with the physician, the results consistently showed a healthy baby.
This assurance put their minds at rest, and they had no idea that their darling Anna would be born with a disease that would permanently alter their lives.
At 34 weeks, Jennie had a C-section to deliver Anna. She peered into Anna’s eyes when the physicians placed the baby in her arms and felt an overwhelming sense of love.
Everything was going fine with their cute little one. However, Jennie couldn’t help but feel apprehensive about her husband when he came to visit her.
Jennie told Cafe Mom, “My husband’s silence scared me.” I pressed him for additional information as the doctor was leaving the room, and he just sat there looking shocked. With remorse, he added, “It’s bad.”
Upon meeting her gaze, her spouse said, “Jennie, she has the most beautiful soul.” Jennie did not know what such terms meant at the moment. Her mind was racing, but she had no idea what was wrong.
Anna suffered from an uncommon disease known as harlequin ichthyosis, which showed up as thick, severely fractured diamond-shaped plates. Jennie said to Cafe Mom shortly after giving birth, “Her delicate skin hardened as they desperately tried to help her.”
The dramatic splitting that followed the hardening left her slathered in open wounds throughout her body.”Anna prevailed despite the physicians’ concerns about her prognosis. She was quite beautiful,” Jennie proudly declared.
Unfortunately, there is no known cure for harlequin ichthyosis. The treatment involves regular showering and thorough skin moisturization, which takes consistent effort. I used to bathe her for hours every few hours, slathering her in Vaseline.
It might not seem like much, but it was one of the things I struggled with the most. I had visualized all the amazing clothes my child would have,” Jennie said.
She set up the “harlequin diva” Instagram page and started posting images of Anna there in an effort to raise awareness of this illness. Through her articles, she sheds light on the challenges faced by parents of children with harlequin ichthyosis on a daily basis.
“Anna won many people’s hearts and is the pinnacle of perfection in its purest form.” She has a natural capacity to carry out these mundane tasks. The world celebrates with us every time we achieve a new milestone, Jennie said to Cafe Mom.
She went on, “I now realize that my love for my daughter is the reason Anna was given to me.” Because we were destined to be together, we will work together to redefine what true beauty means to the world.
In addition to being beautiful in her own right, Anna is fortunate to have parents who will stop at nothing to ensure that she has a happy existence.
Let’s help spread the news about Anna’s story by inviting our friends and family to read this article on Facebook. Despite our differences, we can work together to raise awareness of and respect for the incredible beauty and power that each individual holds.
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