After being invited by a TV station, the architect spoke about her diagnosis in a blood donation campaign. “People around me were shocked by the news. That’s when I decided to expose this part of my life on social media. I started getting a lot of messages, mainly from parents of children with thalassemia asking for guidance. It encouraged me a lot,” she says.
Despite the difficulties and uncertainties, Valeria guarantees that thalassemia has never limited her life. She views blood transfusions as a time of rest, an opportunity to “fill up and recharge,” as she puts it.
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The importance of blood donation
The architect regrets the lack of blood donation culture in Brazil. “Thanks to the transfusions, I lead a very healthy life”, she points out.
Valeria cannot receive a donation from anyone due to the antibodies her body has developed. She needs a material with compatible characteristics in addition to blood type. To ensure her safety in emergency situations, the woman from Paraná got a tattoo with the characteristics of her blood.
The architect has a group of more than 100 permanent donors, called godfathers and godmothers of blood. However, she is aware that the donor shortage is a serious problem for many other people.
For this reason, she is dedicated to raising awareness about the importance of donating blood. It seeks to involve and raise awareness even for those who cannot donate, encouraging them to speak out. “It’s a little ant job,” she says.
Thalassemia is an inherited disease caused by a genetic change in a chromosome that makes haemoglobin.
There are two types of thalassemia, alpha and beta, which can manifest in diseases of different severity: minor, intermediate and major.
The minor version causes mild anemia, sometimes asymptomatic, and for this reason many carriers do not even receive a diagnosis. The intermediate develops moderate symptoms. The major, like Valeria’s, manifests itself when the individual inherits the defective genes from the father and mother – the symptoms appear in the first months of life.
According to the hematologist Sandra Regina Loggetto, coordinator of the Pediatric Hematology and Hemotherapy Committee of the Brazilian Association of Hematology, Hemotherapy and Cellular Therapy (ABHH), it is estimated that about a thousand Brazilians have the intermediate and major forms.
What are the symptoms and how is thalassemia treated?
In thalassemia major, the symptoms start from the three to four months of the baby’s life, with pallor, jaundice and an enlarged spleen. Already in the middle, the manifestation is a little later, around the age of two.
The most severe version of the disease can be identified in the heel prick test. The blood count also shows signs of thalassemia, as well as an exam called hemoglobin electrophoresis and complementary molecular biology tests.
People with thalassemia major need blood donation for life. Because of the transfusions, carriers must undergo an ongoing treatment called chelation therapy to eliminate excess iron from the body.
Is there a cure for thalassemia? “Yes, with the bone marrow transplant”, explains Loggetto. “But not all people have matching donors. The best results are by transplantation between siblings. Sometimes couples decide not to have more children after the first child is born with thalassemia. When there are siblings, they are not always compatible.”
The doctor emphasizes the importance of adherence to treatment: “If the person does not follow the protocol correctly, he will have complications, such as heart failure, severe liver disease, hormonal changes and growth retardation”.
After being invited by a TV station, the architect spoke about her diagnosis in a blood donation campaign. “People around me were shocked by the news. That’s when I decided to expose this part of my life on social media. I started getting a lot of messages, mainly from parents of children with thalassemia asking for guidance. It encouraged me a lot,” she says.
Despite the difficulties and uncertainties, Valeria guarantees that thalassemia has never limited her life. She views blood transfusions as a time of rest, an opportunity to “fill up and recharge,” as she puts it.
SEE TOO
The importance of blood donation
The architect regrets the lack of blood donation culture in Brazil. “Thanks to the transfusions, I lead a very healthy life”, she points out.
Valeria cannot receive a donation from anyone due to the antibodies her body has developed. She needs a material with compatible characteristics in addition to blood type. To ensure her safety in emergency situations, the woman from Paraná got a tattoo with the characteristics of her blood.
The architect has a group of more than 100 permanent donors, called godfathers and godmothers of blood. However, she is aware that the donor shortage is a serious problem for many other people.
For this reason, she is dedicated to raising awareness about the importance of donating blood. It seeks to involve and raise awareness even for those who cannot donate, encouraging them to speak out. “It’s a little ant job,” she says.
Thalassemia is an inherited disease caused by a genetic change in a chromosome that makes haemoglobin.
There are two types of thalassemia, alpha and beta, which can manifest in diseases of different severity: minor, intermediate and major.
The minor version causes mild anemia, sometimes asymptomatic, and for this reason many carriers do not even receive a diagnosis. The intermediate develops moderate symptoms. The major, like Valeria’s, manifests itself when the individual inherits the defective genes from the father and mother – the symptoms appear in the first months of life.
According to the hematologist Sandra Regina Loggetto, coordinator of the Pediatric Hematology and Hemotherapy Committee of the Brazilian Association of Hematology, Hemotherapy and Cellular Therapy (ABHH), it is estimated that about a thousand Brazilians have the intermediate and major forms.
What are the symptoms and how is thalassemia treated?
In thalassemia major, the symptoms start from the three to four months of the baby’s life, with pallor, jaundice and an enlarged spleen. Already in the middle, the manifestation is a little later, around the age of two.
The most severe version of the disease can be identified in the heel prick test. The blood count also shows signs of thalassemia, as well as an exam called hemoglobin electrophoresis and complementary molecular biology tests.
People with thalassemia major need blood donation for life. Because of the transfusions, carriers must undergo an ongoing treatment called chelation therapy to eliminate excess iron from the body.
Is there a cure for thalassemia? “Yes, with the bone marrow transplant”, explains Loggetto. “But not all people have matching donors. The best results are by transplantation between siblings. Sometimes couples decide not to have more children after the first child is born with thalassemia. When there are siblings, they are not always compatible.”
The doctor emphasizes the importance of adherence to treatment: “If the person does not follow the protocol correctly, he will have complications, such as heart failure, severe liver disease, hormonal changes and growth retardation”.
