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Guidelines and suggested questions for making the most of your health care appointments.
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It is approved by the U.S. Food and Drug Administration (FDA) for treating acute promylocitic leukemia (APL). Currently, researchers are studying
arsenic trioxide
arsenic trioxide:
It is approved by the U.S. Food and Drug Administration (FDA) for treating acute promylocitic leukemia (APL). Currently, researchers are studying arsenic trioxide, as a single agent or in combination with…
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ATG is an immunosuppressant, a drug that lowers the body's immune response. It is typically used with
cyclosporine
cyclosporine:
Cyclosporine is used along with antithymocyte globulin (ATG), another immunosuppressant, for treating aplastic anemia and some other forms of bone marrow failure.
as the first-line
immunosuppressive therapy
immunosuppressive therapy:…
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Basic description of
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 how it affects your
bone…
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This patient guide on AML begins with blood basics, AML diagnosis, and then specifics on symptoms, tests, actively managing your AML-related healthcare, and treatment options. *Disclaimer: New treatments may have been approved since the booklets below were published. It is important to speak with a healthcare provider for up-to-date treatment options.
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Get the facts and information you need on
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…
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This patient guide on
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 bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at…
(MDS) begins…
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Emergency health information card for patients who have received a transplant.
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Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
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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 MDS treatment
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Emergency health information card for patients who have not received a transplant.
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Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care.
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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
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…
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Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
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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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Descriptions of the criteria to determine severity of
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…
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Not all healthcare professionals or emergency responders will understand your rare diagnosis and unique needs. AAMDSIF has created an emergency health information card that communicates to others what they need to know about you to help you during a medical emergency.
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As you search online, you will find websites from many different sources. These seven questions will help you analyze and evaluate the credibility of each site you review. Many of these details can also be found in a website's "About Us" or "Contact Us" section.
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What is EMPAVELI®? EMPAVELI® (previously known as
pegcetacoplan
pegcetacoplan:
EMPAVELI® is the first PNH treatment that binds to complement protein C3. It was approved by the Food and Drug Administration in May 2021 for treating adult patients with paroxysmal nocturnal hemoglobinuria (PNH). EMPAVELI is given skin (subcutaneously) by using the Empaveli injector or with an…
) is the…
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Chronic lymphocytic leukemia (CLL)
Chronic lymphocytic leukemia (CLL):
(CRAW-nik lim-foe-SIGH-tick loo-KEE-mee-uh) Chronic lymphocytic leukemia is a type of blood, lymph node and bone marrow cancer in which too many abnormal white blood cells called lymphocytes accumulate in your body.
is a type of cancer that involves certain white blood cells (lymphocytes) that develop in the
bone…
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