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Tyler Andrews has been passionate about running for most of his life. The 26-year-old turned it into his profession and has competed all over the world.
But the biggest competition he ever faced was at the tender age of six, when he was confronted with
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…
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Homecoming queen and top student Briana Donis always wanted to go to the University of Texas at Austin.
“I was having a pretty awesome year. I was very well known at school and I had a boyfriend.” She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started.
“When I would cut myself, like it would be just…
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I am thrilled because I have already written two articles for AAMDS and am now writing a third one at their request. I am so grateful to still be well enough to do this.
The first article, written in 2017, talked about my initial diagnosis in 2010 of MDS del5Q. MDS is separated into 5 categories and typically patients live the longest with this extremely rare type.
I had a very insensitive…
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In this webinar, Dr. Thomas Coates will discuss
blood transfusions
blood transfusions:
A blood transfusion is a safe and common procedure. Most people who have a bone marrow failure disease like aplastic anemia, MDS or PNH will receive at least one blood transfusion. When you receive a blood transfusion, parts of blood from a donor are put into your bloodstream. This can help some…
and…
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In this webinar, Dr. David Dingli presents the latest research presented the American Society of Hematology meeting on
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…
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In this webinar, Dr. Nathan Punwani discusses the development of secondary AML from high risk MDS, treatment options and the quality of life impact for patients.
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VOYDEYA is a prescription medicine used along with ravulizumab or
eculizumab
eculizumab:
Eculizumab (Soliris ®) is given as an IV into a vein at the doctor’s office or at a special center. The procedure usually takes about 35 minutes. You will probably get an IV once a week for the first 4 weeks. Starting in the 5th week, you will get a slightly higher dose of Soliris every 2 weeks…
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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
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.…
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“Your blood counts are nearly nonexistent,” the doctor said.
Before this moment, Debra considered herself to be generally healthy, just tiring easily. She assumed the cause was the big project at work on top of a host of family and volunteer activities, or perhaps issues with her blood pressure. It was autumn of 2017.
She decided to checked out at the urgent care thinking they…
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2021 Treatment update
I am still taking the medication ultomiris, however, in late 2020 I was notified by Alexion (the drug company that makes ultomiris) that the concentration of ultomiris would be changing in 2021. By sometime in 2021 the original concentration of ultomiris will be phased out and will no longer available. The new concentration I would begin getting is 100mg/ml formulation. This…
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I was diagnosed with Severe
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…
on February 1, 2011, just 10…
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Here is Nick's story, as told by his mom, Pamela Karavite
At 13, Nick was an active teenaged boy. He played on a summer basketball team, and two baseball teams. I had seen bruises on his arms and legs, but they were typical for a teen boy that plays hard. Nick had just pitched his first no-hitter, and lethargically played in a couple of basketball games two days later. It…
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Deferiprone
Deferiprone:
Deferiprone is in a class of medications called iron chelators. It works by attaching to iron in the body so that it can be excreted (removed from the body).
Deferiprone comes in a pill form and is taken by mouth. Deferiprone is approved for use in Europe. Researchers in the U.S. are studying…
is in a class of medications called iron chelators. It works by…
Drug last updated
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What is a Biosimilar?
A biosimilar is a type of biologic medication. The term “biosimilar” means that the medication is highly similar to the already approved brand name biologic (“originator” medication). Biosimilars are not generic versions of the original biologic.
Difference Between Generic Drugs and Biosimilars
Generic drugs have identical active ingredients to brand name drugs and are…
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Venetoclax
Venetoclax:
Venetoclax is used to treat chronic lymphocytic leukemia or small lymphocytic leukemia in adults. Venetoclax is used alone or in combination with other cancer medicines to treat these conditions.
is used to treat chronic lymphocytic leukemia or small lymphocytic leukemia in adults. Venetoclax is used alone or in combination with other cancer medicines to treat…
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Currently it is approved by the U.S. Food and Drug Administration (FDA) for use in treating a skin disease associated with leprosy.
Thalidomide
Thalidomide:
Currently it is approved by the U.S. Food and Drug Administration (FDA) for use in treating a skin disease associated with leprosy. Thalidomide is being studied, either as a single agent or in combination with other medicines, for…
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Sabatolimab
Sabatolimab:
Sabatolimab (MBG453) is a novel immuno-myeloid therapy that binds to TIM-3 on immune cells, facilitating antileukemic immune activation and phagocytic killing of leukemic cells. Sabatolimab also binds to TIM-3 on leukemic cells, potentially impeding self-renewal of LSCs via inhibition of TIM3…
(MBG453) is a novel immuno-myeloid therapy that binds to TIM-3 on…
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Mycophenolate mofetil
Mycophenolate mofetil:
Mycophenolate mofetil is approved by the U.S. Food and Drug Administration (FDA) to prevent organ rejection in people who have received a kidney, heart, or liver transplant. This medicine comes as a capsule, tablet, or liquid that is taken by mouth. Researchers are currently studying MMF in…
is approved by the U.S. Food and Drug…
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REBLOZYL® (luspatercept-aamt) is the first erythroid maturation agent (EMA) approved by the US Food and Drug Administration and European Union for the treatment of
anemia
anemia:
(uh-NEE-mee-uh) A condition in which there is a shortage of red blood cells in the bloodstream. This causes a low red blood cell count. Symptoms of anemia are fatigue and tiredness.
in adult patients with…
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Lenalidomide
Lenalidomide:
Lenalidomide is a capsule that is taken by mouth. It is approved for treating low-risk, transfusion-dependent myelodysplastic syndrome (MDS) patients with an abnormality of chromosome 5q. It is currently in clinical trials to test its efficacy with a broader range of MDS patients. For some MDS…
is a capsule that is taken by mouth. It is approved for treating…
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