When she doesn’t get her medication, Jennifer Ikai feels like something is “eating her inside.” It’s about Mycetoma, a tropical disease A neglected disease that, for lack of research and funds, is devastating the lives of an unknown number of people in Turkana (North), the poorest county in Kenya.
Ikai, 21, remembers exactly the day he noticed this as a 10-year-old Hole in the right footthe same deformed foot that she now drags with a limp, marked by small sores, while her four-year-old daughter, Bianca, follows behind her as if she were her shadow.
Mycetoma is part of a list of 25 diseases that affect millions of people, often marginalized, especially in tropical regions of the planet, and whose treatments are outdated, toxic, non-existent, or difficult and expensive. “Mycetoma is the neglected of the neglected,” says Dr. Purna Nyuki-Anoki of the Drugs for Neglected Diseases Initiative (DNDI).
This disease, which is endemic in countries such as Mexico, Iran, Sudan, Somalia and northern Kenya, has two types: bacterial and fungal, and is much more dangerous. It attacks tissues, starting with the skin When it reaches the bone, the only option is amputation. Although, in principle, it does not kill patients, it destroys their ways of life, because those affected usually belong to poor communities that depend on their hands and feet to work, such as the nomadic herders of Turkana.
In spite of everything, Its global spread is not yet knownBecause it is not necessary to inform the authorities, neither in Kenya nor in most countries where the disease is present. This lack of data leaves patients helpless and means that medicines are not included in national health budgets. According to Nyauki-Anoki, “it is people, not diseases themselves, who are neglected in terms of health care, education and other basic needs.”
He snorted
The sun makes you squint at the referral hospital in Lodwar, the capital of Turkana. Dozens of people from all over the county are waiting for treatment at the single-story center. Laboratory technician Jun Ikai, 30 years old Examines the swollen foot of a young manWhile the patient’s brother complains that the cost of a motorcycle taxi ride from the remote village where they live is 8,000 shillings (about 55 euros). “To receive the right treatment, you need the right diagnosis,” says Icay, who was trained by the Spanish NGO Cirugia en Turkana, which has held an annual medical camp in the region for two decades.
But this is not always guaranteed for residents of remote villages in the arid Turkana savannah, who are vulnerable to treading barefoot on the thorns of acacia trees – which can harbor hundreds of infectious agents – and who rely on dispensaries with few resources. “I think he is not yet a good candidate for surgery,” Dr. Francisca Collom explained to Ekai in a video call.
Of the approximately 120 patients registered by hospital staff so far, “some come for the check-up, others we lose because they never come back after giving them the medicine for the first time,” explains this Spanish microbiologist.
treatment
he treatment It is another challenge in treating mycetoma. Although surgery may be an option, the most currently recommended medication is itraconazole, an antibiotic that should be taken in tablet form twice daily for more than a year. This is practically impossible, because only the Spanish NGO provides them with the medicine – free of charge – the annual cost of which can reach 2,000 euros per patient.
Difficulties in treating it mean that, though The cure rate for mycetoma is 80%.This percentage even drops to 35%, according to data from the DNDI initiative, which supports clinical trials using a new drug with easier dosing.
Ekai Akumal Loseke knows these obstacles well. Before mycetoma attacked his left foot, the 41-year-old shepherd had about 400 head of cattle, which he walked for days in search of pasture. Now, he only has ten goats and six donkeys left. The rest was stolen or had to be sold. To pay for medications you took before receiving the correct diagnosisMore than a year after infection.
He does not even know if he will be able to pay the school fees for his five children, he laments. Sitting on a curtain in his hut, next to the traditional wooden bench owned by Turkana men, Loseki confirms that Didn’t miss a single dose.But last October, when he went to the hospital to get more, they told him they were “out of stock.”