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Doctors can’t identify a specific cause in 9 out of 10 MDS cases. These are called “de novo” MDS, meaning arising without a known cause. The remaining
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…
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You are not alone. The AAMDSIF HelpLine has trained and compassionate information specialists ready to answer your questions and provide the support you need. To speak with an information specialist, please call (800) 747-2820, option 2, or email help@aamds.org.
NOTE: Please be aware that the AAMDSIF HelpLine is an information and referral line…
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MDS classification systems divide MDS into subtypes based on the results of blood and
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
tests. Scoring systems such as IPSS and IPSS-R have been developed to determine the severity of the MDS, probable survival term, and the risk of MDS developing into
acute myeloid leukemia…
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A correct diagnosis is essential to getting the right treatment - a complicated problem for a rare disease for which there is no single test. Because doctors see so few MDS cases, they need to conduct a variety of tests to determine what the patient’s disease is and is not.
Doing a Medical History
To understand what is causing your symptoms and low blood counts, your doctor will start with a…
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The symptoms of MDS, also known as
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…
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Doctors classify acquired
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…
into three types, based…
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Many tests and tools are used to diagnose
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…
. These help to…
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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…
symptoms vary from person to person. Specific symptoms…
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What is Chronic Lymphocytic Leukemia or CLL?
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…
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In the medical field, registries are systematic collections of data related to specific diseases, conditions, or treatments. They are databases designed to gather and store detailed information about patients' medical histories, diagnostic information, treatments, outcomes, and various other factors. The primary goal of medical registries is to advance medical research, improve patient care, and…
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Medical research is classified into primary and secondary research. There are three main types of primary research: basic (experimental), clinical, and epidemiological research. Secondary research provides a summary of available studies through reviews and meta-analyses.
Basic research
Basic or experimental medical research seeks to advance our understanding of the fundamental biological…
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The medical research process is a structured and methodical approach used to generate new knowledge and insights about various aspects of medicine and healthcare. It involves several stages, each aimed at addressing specific research questions, testing hypotheses, and contributing to advancements in medical science. Below are components of the typical medical research process:
Identifying…
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In this webinar, Dr. Thota will discuss what caregivers can expect when their loved one is diagnosed- symptoms and side effects of disease and treatments.
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Program participants will learn the basics of Medicare including how and when to enroll, the different parts of Medicare, the difference between Advantage and
Supplement
Supplement:
see dietary supplement
plans and what original Medicare does not cover, eligibility, how to avoid penalties, when to qualify for disability after a blood cancer diagnosis and which part covers infusion…
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Dr. Lai discusses the latest research presented at the 2023 EHA and ASCO meetings. This is an advanced educational presentation.
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In this webinar, Jennie Vagher, certified genetic counselor, discusses hereditary or genetic predisposition to MDS. Jennie is an expert in rare cancer predisposition syndromes.
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Learn about treatments that may be recommended for the treatment 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…
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The panelists are individuals who are living with MDS, or
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…
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Dr. Taha Bat explains extravascular
hemolysis
hemolysis:
(hi-MOL-uh-suss) The destruction of red blood cells.
, focusing on PNH (Paroxysmal Nocturnal
Hemoglobinuria
Hemoglobinuria:
(hee-muh-gloe-buh-NYOOR-ee-uh) The presence of hemoglobin in the urine.
). This session is important for anyone affected by PNH.
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