the inability to clot the blood function necessary to stop bleeding and bleeding, characterizes a disease known as hemophilia .
According to the World Federation of Hemophilia, Brazil has the fourth largest population of patients with the condition in the world, more than 13,000 people, behind only countries like India, China and the United States.
To make the population aware of this rare, genetic and incurable condition, this Wednesday (4th), the Hemophiliac’s Day in Brazil.
types of hemophilia
There are two types of hemophilia: type A hemophilia and type B hemophilia. hemophilia A Occurs when a person has a disability factor VIII a hemophilia B is related to the lack of factor IX clotting agents, which are normally present in people’s bodies and help with blood clotting.
The lack of these factors occurs due to a mutation in the genes responsible for their production, which are in the DNA of each person, in the nucleus of cells. Most often, there are other people in the family with a history or diagnosis of hemophilia. However, in about 30% of cases, there is no family history, which can delay the diagnosis.
Hemophilia can be severe, moderate, or mild. In severe and moderate cases, the signs and symptoms appear in the first years of the child’s life and the most common bleeding is bleeding into the joints, popularly called “joints”, the appearance of purple spots on the body and bruises.
Living with the condition
People with hemophilia present bleeding that takes much longer to be controlled, since the body is unable to properly produce the clot, responsible for stopping blood loss.
Businessman Neder Gustavo dos Santos, 40, from Campo Grande, Mato Grosso do Sul, has severe type A hemophilia. THE CNN he says he discovered the diagnosis when he had an accident and bit his tongue and had bleeding, around five years old.
According to the businessman, the lack of a more specific treatment in the past has left consequences. “The care I take, a little bit because of the sequelae I got, the lack of a more specific treatment in the past, with regard to the joint part, I end up doing some kind of strengthening, it’s a kind of care that I have”, he says.
“I’m a little careful with some types of sports, which could be at risk of some kind of impact. I end up leading a more regimented life, even with regard to food, to be able to help with the treatment that I do today. A little more care due to this context”, he adds.
Today, Neder undergoes prophylactic treatment based on the replacement of factor VIII, which is not produced by his body. He says he also participates in a hydrotherapy program to restore joint and muscle function.
“I end up applying it three times a week, in order to maintain a satisfactory factor level in the body, provided by the SUS. I have direct contact with a hematologist, a longer follow-up every 90 days on average”, he says.
The businessman, who also serves as president of the Association of Hemophiliacs and Other Hereditary Coagulopathies, from Mato Grosso do Sul, says that he has already had bleeding that needed to be controlled in the hospital.
“Sometimes I went to hospitals in very poor health due to bleeding. I had internal bleeding, a type of brain bleeding that was very dangerous, and when I fell at the age of five, I bit my tongue and at that time there was no treatment and I had not been diagnosed yet, I think it was one of the most serious problems, I ended up staying in the hospital for a long time,” he says.
Diagnosis and treatment
O diagnosis It is performed by the hematologist through specific blood tests and information about the patient’s history.
The patient should be referred to hemophilia treatment centers which, in Brazil, are located in blood banks or other public hospitals.
O treatment It is performed from the replacement of the deficient coagulation factor through concentrated factor VIII (for hemophilia A) or IX (for hemophilia B) by venous injection.
In Brazil, the treatment is carried out almost exclusively by the Health Unic System (SUS), which offers a line of care and prevention of complications, in various modalities, as well as correct diagnosis and specialized multidisciplinary care for all patients and their families.
Source: CNN Brasil
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