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Summary for patients from the seventh International
Bone Marrow Failure
Bone Marrow Failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
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Basic description of MDS and how it affects your
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
and blood
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Node ID (debugging only): 2585
Information about iron levels and the ways they fluctuate during treatment, alongside information about the effects of such fluctuations
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Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
and PNH Research Summaries for Patients from the 2018…
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A list of organizations & programs that may provide financial resources & other assistance
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MDS and AML Research Summaries for Patience from the 2018 American Society of Hematology Annual Meeting
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Tips for improving medication adherence
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Summary of the common side effects of MDS treatments and tips for managing them
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Review of the range of MDS symptoms based on low blood counts
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Form to keep track of
platelet
platelet:
The smallest type of blood cell. Platelets help the blood to clot and stop bleeding. Also called a thrombocyte.
transfusions as part of PNH treatment
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Node ID (debugging only): 2582
FABHALTA, a complement factor B inhibitor, is the first oral medication approved to treat
adults with
paroxysmal nocturnal hemoglobinuria
paroxysmal nocturnal hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night.…
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Node ID (debugging only): 2599
INQOVI® (previously known as ASTX727) is a prescribed oral tablet combination of
decitabine
decitabine:
It works by reducing the amount of methylation in the body. Methylation is a process that acts like a switch to turn off or “silence” genes in certain cells. When these genes (called tumor suppressor genes) are turned off, MDS cells and cancer cells can grow freely. Decitabine is…
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Node ID (debugging only): 2600
Learn more about how to find a
clinical trial
clinical trial:
A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening trials test the best way to detect a…
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Node ID (debugging only): 2573
Aplastic anemia
Aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
occurs when blood-forming
stem cells
stem cells…
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Node ID (debugging only): 2108
PNH is a very rare disease. Many doctors have never seen a case of it. So people with PNH may have symptoms for several years before getting a correct diagnosis. Many tests and tools are used to diagnose PNH and find out how severe it is.Blood Tests for PNHWhen you have
anemia
anemia:
(uh-NEE-mee-uh) A condition in which there is a shortage of red blood cells in the bloodstream. This…
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A
blood transfusion
blood transfusion:
A procedure in which whole blood or one of its components is given to a person through an intravenous (IV) line into the bloodstream. A red blood cell transfusion or a platelet transfuson can help some patients with low blood counts.
is a safe and common procedure. Most people who have a
bone marrow failure
bone marrow failure:
A…
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A
bone marrow transplant (BMT)
bone marrow transplant (BMT):
A procedure where bone marrow stem cells are collected from marrow inside the donor's hipbone and given to the patient through an intravenous (IV) line. In time, donated stem cells start making new, healthy blood cells.
is also called a
stem cell transplant (SCT)
stem cell transplant (SCT):
A procedure where blood-…
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Node ID (debugging only): 2335
Blood clots are very dangerous. If you have a
blood clot
blood clot:
A mass of blood that forms when platelets stick together. Harmful blood clots are more likely to happen in PNH. The term thrombus describes a blood clot that develops and attaches to a blood vessel. The term embolus describes a blood clot or other foreign matter that gets into the bloodstream and…
, you need to get…
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PNH, or
Paroxysmal nocturnal hemoglobinuria
Paroxysmal nocturnal hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A…
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Node ID (debugging only): 1141
Aplastic anemia
Aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
is a rare disease in which the
bone marrow
bone…
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Node ID (debugging only): 1140