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Para profissionais da saúde fora dos EUA
Iron Healh Alliance voices
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Prof. Cançado
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O chefe de Suellen
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A mãe de Suellen
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Acute Chest Syndrome: Acute chest syndrome is a lung-related complication of sickle cell disease that can lower the levels of oxygen in the blood and can be life-threatening. It is the second most common cause of hospitalization in patients with sickle cell disease.

Acute hemolytic crisis: An acute hemolytic crisis is characterized by an accelerated rate of red blood cell destruction leading to anemia, jaundice and reticulocytosis (an excess of immature red blood cells in the blood).

Acute Myeloid Leukemia: Acute myeloid leukemia (AML) is a cancer of the blood and bone marrow. It is characterized by an increase in the number of myeloid cells in the marrow that do not mature and interfere with the production of healthy blood cells. The marrow eventually stops working correctly, leaving a person with an increased risk of bleeding and infections. When the bone marrow continually fails to produce enough healthy platelets, red blood cells and white blood cells over time myelodysplastic syndromes (MDS) will progress into AML.

Anemia: Anemia is a condition in which there is less than the normal number of red blood cells or less than the normal amount of hemoglobin in the blood.

Beta-thalassemia: Beta-thalassemias are a group of hereditary blood disorders characterized by ineffective production of red blood cells. This results in different types of the disorder which range in severity from patients with severe anemia to others with no symptoms.
-- • Beta-thalassemia major (TM) is characterized by profound anemia, often requiring medical attention in the first two years of life and leading to a dependency on blood transfusions.
-- • Beta-thalassemia intermedia (TI) is characterized by less severe anemia that appears later in life. Patients may not require blood transfusions, or may only require them occasionally but can still suffer serious complications.

Blood transfusion: Transfusion is the process of transferring blood or blood components (e.g., plasma, blood cells) from one person into the circulatory system of another.

Bone marrow: Bone marrow is a flexible tissue that fills bone cavities and produces most of the blood cells for the entire body. Bone marrow transplants may be used in the treatment of patients with thalassemias, such as non-transfusion-dependent thalassemias (NTDT), and in some cases in patients with MDS and sickle cell disease.

Chelation: Chelation is a process in which a chemical compound, or chelating agent, is introduced into the body. This compound tightly binds to metals such as iron, which are subsequently excreted through body waste.11 Chelation is an important treatment to remove excess iron from the body in patients with thalassemia, sickle cell disease and MDS.

Genetic disorders: Genetic disorders are caused by abnormalities in genes or chromosomes. They can be inherited or caused by environmental factors.14 Sickle cell disease and thalassemias like NTDT are inherited genetic disorders.

Genetic screening: Genetic screening is a test to determine if a person has an abnormal gene that may be passed on to children. Genetic screening can also be used to diagnose severe diseases even in the absence of symptoms, including some types of thalassemia, sickle cell disease and sickle cell trait.

Endemic: An endemic disease or condition is one that is commonly found among particular people or in a certain geographical area. Thalassemia is endemic to South and Southeast Asia, the Middle East and the Mediterranean region. Sickle cell disease is endemic to tropical Africa, the Caribbean, the Middle East and the Indian subcontinent.

Ferritin: Ferritin is the major iron storage protein. The blood level of ferritin serves as an indicator of the amount of iron stored in the body.

Hematopoiesis: Hematopoiesis is the formation of blood or blood cells in the body.

Hemoglobin: Hemoglobin is a protein in red blood cells that contains iron and carries oxygen throughout the blood.

Hemoglobin E-beta-thalassemia: Hemoglobin E-beta-thalassemia occurs predominantly in people of South and Southeast Asian descent.24 The severity can vary significantly, with some patients experiencing no symptoms and others requiring regular transfusions.

Hemoglobin H disease (HbH-alpha-thalassemia): Hemoglobin H disease (HbH-alpha-thalassemia) occurs predominantly in people of Southeast Asian, Middle Eastern and Mediterranean descent.

Hereditary disease: A hereditary disease is passed on from parent to child. Thalassemia and sickle cell disease are hereditary diseases.

Iron: Iron is an essential element in the human body mostly found in red blood cells. Iron, as part of the protein hemoglobin, helps cells “breathe” by carrying oxygen to cells and tissues, and is essential to giving the body energy and having a properly functioning immune system.27 A lack of iron is a common cause of anemia. Patients with sickle cell disease, MDS, and thalassemias, such as NTDT, can accumulate too much iron in their body and develop iron overload.

Iron chelator: An iron chelator is any agent that binds to excess iron in the body. The excess iron is then excreted through body waste.

Iron metabolism: Iron metabolism is the regulation of normal iron levels within the body.

Iron overload: Iron overload is an accumulation of excess iron in the body. Under normal conditions, very little iron enters and leaves the body. Chronic iron overload is a complication of conditions that require multiple blood transfusions, like sickle cell disease, myelodysplastic syndrome and thalassemia, and is also a complication of non-transfusion-dependent thalassemia.

Iron toxicity: Iron toxicity occurs when chronic iron overload begins to cause tissue damage.

Myelodysplastic Syndromes: Myelodysplastic syndromes (MDS), also called preleukemia, refer to a category of diseases that affect the bone marrow and blood. In MDS, the blood-forming cells in the marrow slow down, or even stop making the three types of blood cells. Most patients with MDS will develop anemia and may need blood transfusions as a result.

Non-transfusion-dependent thalassemia(NTDT): Non-transfusion-dependent thalassemia (NTDT) syndromes encompass several types of thalassemia, a diverse family of genetic disorders affecting red blood cell production, causing anemia.
Unlike patients with other types of thalassemia, those with NTDT syndromes can live without regular blood transfusions. However, even without transfusions, NTDT patients still accumulate excess iron from increased absorption through the stomach and intestines leading to debilitating health complications.

Non-transferrin-bound iron (NTBI): Non-transferrin-bound iron (NTBI) is the toxic, free form of iron which easily penetrates tissue barriers and forms iron deposits that lead to organ damage and dysfunction.

Preleukemia: Preleukemia is another word for myelodysplastic syndromes (see MDS definition).

Red blood cells: Red blood cells are the most common type of blood cells and the body's principal means of delivering oxygen to the body tissues in the circulatory system. Production of red blood cells is compromised in sickle cell disease, MDS and thalassemia patients.

Serum: Serum is the clear liquid that can be separated from clotted blood. Serum differs from plasma, which is the liquid portion of blood containing red and white blood cells and platelets.

Sickle cell disease: Sickle cell disease is a hereditary blood disorder characterized by sickle-shaped red blood cells. It is a chronic, life-long, debilitating disease with many forms that can range in clinical severity from asymptomatic to life-threatening.

Splenectomy: A splenectomy is a surgical procedure that partially or completely removes the spleen, an organ that acts as a blood filter. In thalassemia and sickle cell disease patients, the size of the spleen can increase over time, resulting in worsening anemia and the need for more transfusions. Removing the spleen can reverse these effects, but can lead to serious complications including blood clots, pulmonary hypertension and silent stroke.

Stroke: A stroke occurs when the blood supply to part of the brain is interrupted or severely reduced, depriving brain tissue of oxygen and nutrients. In sickle cell disease this is caused by the occlusion of small vessels from deformed sickle-shaped cells.

Thalassemia: Thalassemia refers to a diverse family of genetic disorders characterized by an underproduction of hemoglobin. NTDT is one type of thalassemia.

background credit

SCD Voices é baseado na ideia original da Agência Catalpa e foi conduzido em nome da Iron Health Alliance.

Coordenação, entrevistas, roteiro, cenário: Géraldine Genin, Audrey Andrianarivo
Fotografia e cenário: Thomas Troadec
Design gráfico: Axel Perignon
Edição de som: Christophe Lalanne-Claux
Engenharia de Web: Florian Gracy
Ano de produção: 2014

O conteúdo deste website é protegido pelos termos do Código de Propriedade Intelectual. Qualquer reprodução, total ou parcial, ou qualquer imitação, de seu formato ou conteúdo, sem consentimento escrito prévio dado por seus autores e criadores, é estritamente proibida.

Nota: Este é um site internacional da Iron Health Alliance e é destinado a profissionais da saúde fora dos EUA. As informações neste site não são específicas a um país e podem conter informações que estejam fora das indicações aprovadas no país no qual você está localizado.

Copyright © 2014 Novartis AG. Todos os direitos reservados.

background about

O Projeto

Anemia Falciforme (AF) é um conjunto de desordens genéticas herdadas, caracterizado pela síntese defeituosa de hemoglobina. Causando anemia crônica desde a primeira infância, episódios de dor aguda conhecidos como crises vaso-oclusivas, riscos de infecções e danos a órgãos, esta doença tem impacto significativo na vida cotidiana e apresenta desafios importantes para as pessoas afetadas, suas famílias e a comunidade médica

Apesar de as melhorias no cuidado com o paciente terem tido uma influência significativa no prognóstico, com elevação substancial da expectativa de vida, a saúde no longo prazo, qualidade e escolhas de vida ainda dependem do acesso a tratamentos, cuidado constante e monitoramento. Conscientização global e ação em todos os níveis ainda são necessárias para se alcançar uma melhor compreensão, melhor acesso a tratamento e melhor manejo.

Deste contexto desafiador, surgiu a ideia do SCD Voices: uma aventura humana internacional iniciada em 2013, uma jornada projetada para coletar e compartilhar histórias de indivíduos sobre a AF. O documentário de Internet aqui apresenta testemunhos de pacientes e médicos encontrados nesta jornada. Ele mostra a diversidade da AF e os meios pelos quais as pessoas lidam com essa doença no dia a dia em diferentes partes do mundo. Este projeto foi idealizado para aumentar a conscientização por meio de uma série de retratos que mostram como a AF impacta a vida cotidiana das pessoas.

Laços humanos e diálogos em ação

SCD Voices também é sobre as pessoas que juntaram seus esforços e colaboraram através de fronteiras geográficas durante esta jornada global:
--• Gerentes de projeto interagiram com especialistas em AF locais que mostraram dedicação intensa: primeiro em atrair pacientes dispostos para o projeto, depois tomando parte nas entrevistas, falando sobre suas experiências, e finalmente apresentando destaques científicos e meios de conversar sobre a doença, a fim de contribuir para uma melhor compreensão.
--• Conselheiros e coordenadores locais trabalharam juntos para permitir que especialistas e pacientes em cada país compreendessem a natureza e a importância deste projeto, arranjaram os encontros preliminares e forneceram o registro local.
--• Os momentos de troca privilegiada entre pacientes, o entrevistador e o fotógrafo deram luz ao material rico e sensível que você pode descobrir agora neste site.

Durante todo o seu desenvolvimento, o projeto SCD Voices foi uma experiência colaborativa, concebida para oferecer perspectivas humanas e sensíveis à doença, de modo a permitir uma melhor compreensão e gerar mais ações.

Parceiros: Novartis e a Iron Health Alliance

A Novartis Oncologia estabeleceu a Iron Health Alliance em 2011 como um modo de ajudar a melhorar o padrão de cuidado a pessoas diagnosticadas com sobrecarga de ferro crônica. A Iron Health Alliance é uma parceria que eleva o padrão do cuidado à sobrecarga de ferro crônica através do suporte à educação, acesso ao diagnóstico e manejo de pacientes visando a resultados otimizados.

A Iron Health Alliance fornece suporte através de três pilares essenciais de cuidados para melhorar resultados:
--• Maior conscientização e conhecimento de métodos diagnósticos para detectar e medir a sobrecarga de ferro
--• Maior conscientização de anemias
--• Maior conscientização da importância da aderência ao tratamento

É como parte desta dinâmica que a Iron Health Alliance deu impulso ao SCD Voices, permitindo que a Novartis patrocinasse este documentário de Internet, que é um passo importante em direção à conscientização global da AF.


Esta aventura não teria sido possível sem:
--• Os quatro pacientes, cujos nomes serão mantidos em sigilo em respeito à sua privacidade, que concordaram em compartilhar suas experiências como parte deste projeto de diálogo e comunicação internacional,
--• Aos especialistas locais em AF, cujos envolvimentos humanos e científicos foram notáveis:
-----Professor Rodolfo Cançado, São Paulo, Brasil
-----Dr. Marc Hendricks, Cidade do Cabo, África do Sul
-----Professora Marianne de Montalembert, Paris, França
--• Aqueles que possibilitaram que os encontros acontecessem nas melhores condições, particularmente as equipes locais da Novartis, cujo apoio tornou este projeto possível.