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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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MarrowForums provides free discussion forums for patients with
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…
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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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MDS and AML Research Summaries for Patients from the 2019 American Society of Hematology Annual Meeting
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Summary of the common side effects of MDS treatments and tips for managing them
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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…
occurs when blood-forming
stem cells
stem cells…
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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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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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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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PNH occurs because of a genetic change in
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
stem cells
stem cells:
Cells in the body that develop into other cells. There are two main sources of stem cells. Embryonic stem cells come from human embryos and are used in medical research. Adult stem cells in the body…
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PNH can cause variety of symptoms. These can vary greatly from person to person. You may have many symptoms, or just one or two. And you may get a new symptom at any point in the course of your illness. The severity and number of symptoms are often related to the size of your PNH
clone
clone:
To make copies. Bone marrow stem cells clone themselves all the time. The cloned stem cells…
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AAMDSIF provides educational materials for patients and healthcare professionals written in plain language and reviewed by highly respected and recognized medical doctors who are experts in
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,…
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In this webinar, Dr. David Beck, MD, PhD and Anna Cantor, MA, MS, CGC, discuss VEXAS syndrome which is a newly discovered auto-inflammatory condition affecting older adults. VEXAS syndrome often overlaps with
myelodysplastic syndromes
myelodysplastic syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the…
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Tiffany Tanaka, MD (UC San Diego Health) helps MDS patients understand the most common mutations and how genetic testing can help patients get the best possible treatment.
Session recorded as part of the Spring 2021 Virtual Patient & Family Conference.
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Dr. Daria Babushok discusses the significance of PNH clones in the diagnostic assessment of patients with
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…
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In this webinar, Dr. Firas El Chaer discusses the diagnosis of secondary AML and how treatment options are decided. Secondary
acute myeloid leukemia
acute myeloid leukemia:
(uh-KYOOT my-uh-LOYD loo-KEE-mee-uh) A cancer of the blood cells. It happens when very young white blood cells (blasts) in the bone marrow fail to mature. The blast cells stay in the bone marrow and become to…
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Dr. Catherine Lee will provide a comprehensive overview of chronic and acute graft vs host disease ("GvHD") which is a complication of
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers…
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