Lía Rico plays and goes to kindergarten like all four-year-olds. However, she has had to stop playing daily and take medication from time to time because she has had cystic fibrosis since she was 11 months old. She is one of 75 people diagnosed with the disease in El Salvador, according to Gilberto Barrera, president of the Foundation Against Cystic Fibrosis, who was still counting as of the second week of October This number is in addition to at least 200 other patients with cystic fibrosis. Suspected of having it. Cystic fibrosis is an inherited, multisystem, chronic, progressive, and fatal disease characterized by signs of lung disease and pancreatic dysfunction. In Leah’s case, one of the first symptoms was pneumonia, which is why she was hospitalized multiple times before she was diagnosed. Her mother, Fátima Rico, said: “They did a lot of tests and ruled out all kinds of diseases. They ruled out leukemia first, ruled out thrombosis and cancer until they sent me to Broome hospital, and the diagnosis was cystic fibrosis.” Every two months, Lía travels from the Amatepec community in the city of Soyapango to the Benjamin Bloom National Children’s Hospital for physical examinations. He was hospitalized 15 times over the years, many of them seriously, and he spent more than 20 years in hospital. or 23 days of hospitalization due to pneumonia and hypokalemia. The little girl was a patient suffering from digestive and respiratory problems, for which she was prescribed different types of medications such as pancreatic enzymes, budesonide, albuterol, saline solution and alfadoxin. Lía had a complex Catholic upbringing. “At school she was a normal girl like other children,” said Fray Martín de Porres and her mother. “She didn’t have to have complexities, all her classmates were Love her, thank God, and respect her while she takes her medication,” her mother said.
A kind of uphill sickness.
The foundation’s president said that years ago, it would have been impossible to diagnose children with cystic fibrosis at a young age because there was no newborn screening, only sweat chlorine testing. “Social Security increased screening first and, I believe, the national system started last year, which is why the diagnosis of cystic fibrosis years ago was completely blank,” Barrera said.
Two months ago, the organization, along with the El Salvador Foundation for Health and Human Development (FUSAL) and Direct Relief, began genetic testing of patients to find out what types of mutations they have, but only if they have any of the following : There are 32 mutations in the United States because the testing was done in this country. Samples for these tests were collected in El Salvador through analytical laboratories and then sent to the United States for results. There are more than 2,000 cystic fibrosis mutations, and knowing them can help patients improve their treatment because they can get access to other drugs. These tests are expensive, with sweat chlorine testing costing about $120 in the private sector, for example, and genetic testing costing about $300. The president of the association assured that no children had died from cystic fibrosis in three years, although one or two children had been recorded losing their lives to the condition in previous years.
Economic and housing issues.
Leah’s mother reported that she faced financial difficulties not only coping with her daughter’s illness but also raising her three other children, a 17-year-old girl, a 12-year-old girl, and an 8-year-old boy. Fatima said: “Sometimes I had some trouble going to Broome, but thank God I always went to all the consultations and I didn’t let the girl miss a single consultation.” However, she also admitted , going to Broome will face financial problems. A single mother influences her to buy medicines and follow a girl’s diet, which must be rich in protein and calories. In addition, Rico’s family faces another problem. “The girl’s father wanted to kick us out because he allegedly sold her ( ) and lawyers came to intimidate us, despite the situation we were going through with Leah.” She declared: “Lawyers came to threaten and intimidate us and make us Not being able to leave the house and me being a single mother and not being able to get a steady job because my daughter is 100% dependent on me for my treatments and my medications and everything.” Leah’s parents said three days after being diagnosed with the disease Abandoning them, she had to face her daughter’s illness and care for the child alone.