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Für außerhalb der USA-Ansässige
Iron Healh Alliance voices
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Prof. Haase
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Der Ehemann von Bergit
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Bergit
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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.

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MDS Voices basiert auf der ursprünglichen Idee der Agence Catalpa und wurde im Namen der Iron Health Alliance durchgeführt.

Koordination, Interviews, Text, Szenario: Géraldine Genin, Audrey Andrianarivo
Fotografie und Szenario: Thomas Troadec
Grafikdesign: Axel Perignon
Tonschnitt: Christophe Lalanne-Claux
Web Engineering: Florian Gracy
Produktionsjahr: 2014

Der Inhalt dieser Website ist durch das französische Urheberrechtsgesetz geschützt.

Jede Art von Vervielfältigung, Kopie oder Nachbildung des Inhaltes, selbst teilweise, ist ohne vorangehende schriftliche Genehmigung der Autoren und Urheber strengstens verboten.

Haftungsausschlusserklärung: Dies ist eine internationale Website für Iron Health Alliance, die sich an Fachkräfte im Gesundheitswesen außerhalb der USA wendet. Die Informationen auf dieser Website sind nicht landesspezifisch und können Informationen enthalten, die nicht den zugelassenen Indikationen in Ihrem Land entsprechen.

Copyright © 2014 Novartis AG. Alle Rechte vorbehalten

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Das Projekt

Myelodysplastische Syndrome (MDS) beziehen sich auf eine vielgestaltige Gruppe von Erkrankungen des Knochenmarks, die durch eine unzureichende Bildung von Blutkörperchen gekennzeichnet ist. Unter den verschiedenen im Knochenmark produzierten Arten von Blutzellen - rote Blutzellen, weiße Blutzellen und Blutplättchen - können entweder eine, zwei oder alle drei von MDS betroffen sein. MDS tritt meist spät im Leben der Betroffenen auf, was die Lebensqualität älterer Patienten durch eine Vielzahl damit verbundener Komplikationen erheblich beeinträchtigen kann. Trotz Forschungsbestrebungen und jüngster Fortschritte im PatientInnenmanagement stellt MDS eine bedeutende Herausforderung für PatientInnen und deren Familien in Bezug auf deren Gesundheit und Lebensweise dar.

Globale Sensibilisierung und Aktion sind wesentlich um besseres Verständnis, bessere Diagnostik und besseres Management zu erreichen. Nur so kann, trotz begrenzter Lebenserwartung, adäquat auf die Bedürfnisse der PatientInnengemeinschaft eingegangen werden.

Aus diesem dringlichen Kontext ging die Idee zu MDS Voices hervor: Ein internationales menschennahes Abenteuer, das 2013 begann. Eine Reise um individuelle Geschichten über MDS zusammenzutragen und zu teilen.

Die Webdoku präsentiert Zeugnisse von Patienten und Ärzten, die während dieser Reise angetroffen wurden. Sie zeigt die Vielfältigkeit von Myelodysplastischen Syndromen und die Art und Weise wie Menschen in verschiedenen Teilen der Welt mit dieser Krankheit in ihrem täglichen Leben umgehen. In einer interaktiven Form präsentiert das Projekt eine Reihe von Porträts, die die Auswirkungen von MDS auf den Alltag der Betroffenen zeigen und Sensibilisierung fördern sollen.


Zwischenmenschliche Bindungen und Dialog in Aktion

MDS Voices handelt auch von den Menschen, die während dieser globalen Reise ihre Kräfte vereint und über geografische Grenzen hinaus zusammengearbeitet haben:
--• Die Kollaboration zwischen den ProjektleiterInnen und äußerst engagierten lokalen MDS-ExpertInnen, die bereitwillige Patienten in das Projekt einbrachten und über ihre eigenen Erfahrungen in den Interviews berichten. Durch ihre Fachkenntnisse und ihre Art und Weise über die Krankheit zu sprechen, tragen sie schlussendlich auch zu einem bessern Verständnis von MDS bei.
--• Die Zusammenarbeit zwischen örtlichen BeraterInnen und KoordinatorInnen ermöglichte ExpertInnen und Patienten in den betroffenen Ländern das Projekt und seine Bedeutung näher zu bringen, den ersten Kontakt mit ihnen herzustellen und über die Geschehnisse vor Ort auf dem Laufenden zu sein.
--• Die Begegnungen und der bemerkenswerte Austausch zwischen Patienten, der Interviewerin und dem Fotografen brachten die reichhaltigen und sensiblen Zeugnisse hervor, die Sie nun auf der Voices-Website entdecken können.

Das MDS Voices-Projekt wurde während seiner gesamten Entwicklungsphase durch die Partizipation der verschiedenen Mitwirkende getragen. Diese Erfahrung eröffnet sensible, menschennahe Perspektiven auf die Krankheit um besseres Verständnis und Handlungsbereitschaft zu fördern.


Partner: Novartis und die Iron Health Alliance

2011 gründete Novartis Oncology die Iron Health Alliance, um den Betreuungsstandard der von chronischer Eisenintoxikation Betroffenen zu verbessern. Die Iron Health Alliance basiert auf starken Partnerschaften, die dieses Ziel durch Förderung von Bildung, besseren Zugang zur Diagnostik und optimiertes Patientenmanagement verwirklichen wollen.

Die Iron Health Alliance ist auf drei Grundpfeiler um Behandlung von patientent zu verbessern basiert:
--• Verbessertes Bewusstsein und wachsende Kenntnisse über Diagnostikmethoden um Eisenintoxikation zu erkennen und abzuschätzen
--• Verbessertes Bewusstsein über Anämien
--• Verbessertes Bewusstsein über die Bedeutung von Therapietreue

Im Rahmen genau dieser Dynamik gab die Iron Health Alliance dem Projekt MDS Voices den Anstoß:Eine von Novartis gesponserte Webdoku für ein weltweit wachsendes Bewusstsein über MDS.


Danksagungen

Dieses Abenteuer wäre nicht möglich gewesen ohne:
--• die sechs Patienten, die sich dazu bereit erklärt haben, ihre Erfahrungen im Rahmen dieses internationalen Dialog-Projektes zu teilen. Um ihre Privatsphäre zu respektieren, werden ihre vollen Namen nicht veröffentlicht.
--• die lokalen MDS-ExpertInnen und ihr bemerkenswertes persönliches und wissenschaftliches Engagement
-----Dr. Shanti Amé, Straßburg (Frankreich)
-----Dr. Tereza Cristina Bortolheiro, Sao Paulo (Brazil)
-----Dr. Pierre Fenaux, Paris (Frankreich)
-----Dr. Karen Gunther, Johannesburg (Südafrika)
-----Dr. Detlef Haase, Göttingen (Deutschland)
--• und all diejenigen, die die Begegnungen unter den bestmöglichen Bedingungen eingerichtet haben. Insbesondere die örtlichen Novartis-Teams, deren Unterstützung dieses Projekt erst möglich gemacht hat.