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Folate
Folate:
(FOE-late) A B-vitamin that is found in fresh or lightly cooked green vegetables. It helps the bone marrow make normal blood cells. Most people get enough folate in their diet. Doctors may have people with paroxysmal nocturnal hemaglobinuria (PNH) take a man-made form of folate called folic acid.
is a B-vitamin that is found in fresh or lightly cooked green vegetables.…
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Clinical research
Clinical research:
A type of research that involves individual persons or a group of people. There are three types of clinical research. Patient-oriented research includes clinical trials which test how a drug, medical device, or treatment approach works in people. Epidemiology or behavioral studies look at the…
is at the heart of all medical advances, identifying new…
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Growth factors
Growth factors:
Growth factors are naturally occurring hormones in your body that signal your bone marrow to make more of certain types of blood cells. Man-made growth factors may be given to some people with bone marrow failure diseases to help increase red blood cell, white blood cell or platelet counts.
Red…
are naturally occurring hormones in your body that signal…
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Iron chelation therapy
Iron chelation therapy:
(kee-LAY-shun) A drug therapy to remove extra iron from the body. Patients with high blood iron (ferritin) levels may receive iron chelation therapy. The U.S. Food and Drug Administratin (FDA) has approved two iron chelators to treat iron overload in the U.S. - deferasirox, an oral iron chelator,…
is the main treatment used when you have a…
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If you have MDS and have a high-risk or intermediate-2 risk IPSS score, you have a higher risk of developing
Acute Myelogenous Leukemia
Acute Myelogenous Leukemia:
(uh-KYOOT my-uh-LAH-juh-nuss 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 numerous…
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Immunosuppressive drug therapy
Immunosuppressive drug therapy:
(i-myoo-no-suh-PREH-siv) Drugs that lower the body's immune response and allow the bone marrow stem cells to grow and make new blood cells. ATG (antithymocyte globulin) or ALG (antilymphocyte globulin) with cyclosporine are used to treat bone marrow failure in aplastic anemia. Immunosuppressive…
lowers your body's immune…
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Diseases like
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…
,
myelodysplastic syndromes…
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The most common white blood cells are called neutrophils. They fight infection. Patients who don't have enough healthy neutrophils are said to have
neutropenia
neutropenia:
(noo-truh-PEE-nee-uh) A condition in which there is a shortage of neutrophils in the bloodstream. Neutrophils are a type of white blood cell. This results in a low white blood cell count.
. Because of their low white…
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My husband David’s journey with MDS began in April 2014, when it was discovered almost by chance while we were on vacation. David was bitten by a brown recluse spider and had a very severe reaction to it. He had to be hospitalized, which is when he got his first blood test in years. The doctor noted that his blood counts were low and, while he didn’t rule out that the spider bite might have…
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My mom is a
pharmacist
pharmacist:
A highly trained and licensed professional whose job concerns the preparation, distribution, and use of prescription drugs. A pharmacist also advises patients, as well as physicians and other health practitioners, on the selection, dosages, interactions, and side effects of medications.
and I currently attend the University of Missouri-Kansas City…
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I had an article published in 2017 by AAMDSIF and was asked to update everyone. I will briefly reiterate the first part of my journey and then move forward!
I was originally diagnosed in 2010 with Myelodysplastic Syndrome by an insensitive
oncologist
oncologist:
(on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer.
, who told me…
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“Hey, Braeden, we need to go.”
Little did 12-year-old Braden understand that he was headed towards hospital admission.
Earlier that day, Braden nearly passed out on the basketball court. He was a happy, athletic child, who excelled at several sports. His mom, Becki, took him for blood work.
Later, Braeden’s parents heard from the doctor’s office: take him to the Emergency…
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In this webinar, Jane Hamilton discusses how and why it is important for caregivers to practice self care. The entire interactive session was recorded.
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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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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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