Early diagnosis is made by a foot examination performed on the newborn within the newborn screening program. According to Hospitalda Criança de Brasília, at least one newborn has the disease for every 1,200 births in the federal district.
Severe pain, medication, hospitalization, blood transfusion. This is the daily life of more than 2000 people in the federal district affected by sickle cell disease. According to the Ministry of Health, the number of patients in Brazil has increased to 30,000. Chronic, hereditary, and hereditary diseases are characterized by impaired hemoglobin structure. Hemoglobin is not disc-shaped, but looks like a sickle or a weakening of the moon, impairing the body’s transport of oxygen.
This Sunday (19) is World Sickle Cell Awareness Day, established by the United Nations (UN) in 2008. The suggestion is to disseminate knowledge about the disease to facilitate early diagnosis and treatment throughout the public network.
Early diagnosis is made by a foot examination performed on the newborn within the newborn screening program. The child is then regularly monitored at the hospital Dakrian Sade Brasília (HCB) for a dedicated team, special vaccination schedule and folic acid supplementation. The family receives support, guidance and self-care techniques.
“It’s not just anemia. We understand that changes in the vascular system of red blood cells are a systemic disease that can harm all organs of the body.”Isis Magalhães, Technical Director of the Children’s Hospital in Brasília
For every 1,200 births under federal control, at least one newborn has the disease, and 741 children with sickle cell disease are currently being treated in units, according to HCB data. Of these, 87 are part of a regular blood transfusion program to prevent one of the threats to the disease, cerebrovascular accident (CVA).
Last Wednesday (15), Fundação Hemocentro de Brasília (FHB) held an event celebrating the day of dissemination of knowledge and information about sickle cell disease, attended by patients and medical professionals.
Isis Magalhães, a pediatric hematologist who is the technical director of the HCB, said that sickle cell disease is a patient’s daily routine, including the risk of changes in nerve development, as well as the risk of pain, progressive renal failure, and increased susceptibility to infections. It explains that it has a direct impact on life. “It’s not just anemia. We understand that changes in the vascular system of red blood cells are a systemic disease that can harm all organs of the body,” hematologists explain. ..
She emphasizes the importance of society as a whole to understand that sickle cells cause chronic pain and some other health problems. “This is a public health issue that everyone in the ambulance crew knows and needs to pay attention to. This involvement of civil society seeks public policy to protect and promote the lives of patients. It’s very important to do, “she adds.
Fundação Hemocentro de Brasília (FHB) is responsible for managing the blood, components and blood product system of DF and coordinating comprehensive care policies for patients with sickle cell disease. Technical training is being promoted for community health professionals and students to guide patients with hemoglobinopathy. Multidisciplinary care at all levels of care is the responsibility of the DF Health Department.
Osnei Okumoto, director and president of Fundação Hemocentro de Brasília (FHB), explains that all donated blood is analyzed in the laboratory to control the quality of the inputs. However, care is even greater for phenotypic blood transfused into patients with sickle cell disease.
“In addition to identifying a person’s blood type, we detect several other antigens to identify the optimal blood for sickle cells. These people do not develop resistance and are ill. It’s an additional compatibility so that it’s more difficult to control, “explains Osney.
The manager added that the illness cannot be ignored. “This is a very dangerous illness associated with all kinds of neurological problems. It is imperative that we be able to see patients in different ways in order to provide a better quality of life.” He points out.
Elvis Magalhães, 54, has been suffering from severe sickle cell anemia for 38 years. He had hundreds of round-trip trips to the hospital, side effects, medications and treatments, but was unsuccessful. He was one of the first people in Brazil to get rid of the disease until he could have his brother’s bone marrow transplanted and everything changed.
“People with sickle cell disease have hope and we are fighting for more people to have access to treatments.”Elvis Magalhães, Coordinator of the Brasiliense Association for People with Sickle Cell Disease
“Do you know that commitment to the illness I had? I’m done. Of course I take care of myself, but it’s very good to live more calm. Something has improved. I wasn’t hoping to do it anymore, but when the opportunity came, I was very happy, “he says. Since 2015, more than 150 people with sickle cell disease have had bone marrow transplants in Brazil, six of whom live in federal jurisdiction.
Currently, Elvis is the coordinator of the Abradfal Association for Sickle Cell Disease, advocating public policy to support the lives of patients directly affected by sickle cell disease. “People with sickle cell disease have hope and we are fighting for more people to have access to treatments. There is no doubt about progress in recent years, but there is still a long way to go.” He adds.
Civil servant Emerson Silva, 48, was unaware of the disease until her first child, Victor Hugo, was diagnosed at the age of one. Today, another boy with sickle cell disease, Rafael’s father, 9-year-old, attends events and awareness lectures, as well as about the symptoms, care, and treatment of sickle cell disease. I understand.
“My children’s lives have been saved several times by hospitalization and blood transfusions. It saves knowledge of humanized treatment and illness.”Emerson Silva, civil servant
The discovery of the firstborn’s illness was unexpected. On a visit the boy paid to his grandmother for his work, a local doctor noticed signs such as swelling of the limbs, the child had sickle cells, and he was urgently examined. I warned that it should be. .. Even without believing in the visual diagnosis inherited by the child’s grandmother, Emerson took the boy to a doctor and was surprised negatively.
“I didn’t know anything about this illness. I didn’t know anything at all. After a lot of suffering, I stopped and studied because I needed to help my son,” recalls the civil servant. .. Victor Hugo had to have his spleen removed as a child and undergo other surgery throughout his life, in addition to hundreds of hospitalizations to limit his pain crisis.
However, despite the difficulties imposed by his illness, he managed to maintain a comfortable life, study and work. However, on December 21, 2021, Victor Hugo died while on vacation at his grandmother’s house in Rio de Janeiro. He was 23 years old.
“It was the only crisis I wasn’t there to show the doctor what my son needed,” Emerson laments. Emerson also emphasizes the importance of medical knowledge and the reliability of patient pain.
Now it is Emerson who lives in pain and he is working hard to continue the fight for awareness of the illness. “Everything will be better when everyone knows what it is and how it is treated,” he says.
The second son, Rafael, has a milder shape of sickle cells and is most often treated at home. When he was born, he had the hope of being compatible with his eldest son for a bone marrow transplant, but unfortunately that was not possible. “My children’s lives have been saved several times by hospitalization and blood transfusions. Knowledge of humanized treatment and illness is preserved,” he concludes.