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In this webinar, Dr. Abhay Singh discusses the latest MDS and AML research presented at the 2024 EHA and ASCO meetings. This is an advanced educational presentation.
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I was diagnosed with PNH fifteen years ago, at the age of 51. This is my story.
I grew up on the West Side of Los Angeles. Raised by a single parent, my mother was a strong woman of faith. My father, the eldest of twelve, died of a heart attack when I was about nine months old. Four of his six brothers, and a couple of my cousins died at an early age. My mother…
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Sarah 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…
in fall of 2015. Shortly…
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By the time he was 10 years old, Xisto had earned a Black Belt in taekwando. He was traveling to, and winning, competitions.
Yet he was tired enough to fall asleep at unusual times. Then the
petechiae
petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots on the skin, caused by bleeding. It is often a symptom of a low platelet count.
developed, all over his feet and hips…
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Hi! My name is Stefania, I am 31 years old, and I am from Ecuador. My life changed in July 2018 when I was diagnosed with very 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…
Patient Chronicle last updated
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In this webinar, Jennifer Lotter explains medical terms most commonly used with a diagnosis 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…
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“You must go to Children’s Hospital now.”
Ninth grader Patrick McLaughlin was surprised, but followed his mom’s lead, who calmly drove to the Emergency Department while disguising her fear and confusion.
Earlier that week, while Ellie was on a business trip, her elder son, Liam, called. “Mom, Paddy’s still sleeping after early dismissal.” It was 8:30pm. At that moment, she knew that she…
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In this webinar, Dr. Andrew Matthews discusses Low Risk MDS, current treatments and what's on the treatment horizon. Dr. Matthews took many questions from the live audience.
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DNA is a structure in the body. It contains data about how the body develops and works. Telomeres are found on the end of
chromosomes
chromosomes:
The part of the cell that contains our DNA or genetic code.
in DNA. Some people with short telomeres or other gene changes can develop diseases of the
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells…
Clinical Trial last updated
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Dr. Rachel Salit explains the condition, Myeloproliferative Neoplasms, along with treatment options. Her session focuses on
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
transplantation as a treatment for this rare disease.
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When is a
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 some patients the possibility of a cure. But for many patients, a BMT is not an option due…
offered as a treatment for MDS…
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Gloria F. Gerber, MD, explains the diagnosis and treatment of 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…
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Pashna N. Munshi, MD, describes the strategies that
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 some patients the possibility of a cure. But for many patients, a BMT is not an…
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Keith W Pratz, MD, explains High-Risk 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 blood cell…
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Ellen Kalinosky describes her turbulent journey through multiple
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…
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Dr. Daria Babushok explains the medical condition 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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In this webinar, Doris Piccinin, registered dietician, will discuss how diet can play a role in living well with a
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…
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Patients can make a difference in the development of future treatments and the improvement of outcomes by participating in research. Check out the sections here to discover if any of these options are suitable for you.
Clinical Trials and Studies feature
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood…
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The current standard treatment for
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…
(AA) is…
Clinical Trial last updated
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Judi Wilkinson of Ormond Beach, Florida, has worked as a mortgage underwriter, 911 operator and auto racing team manager. She was accustomed to handling tough situations, as well as emergencies.
But when the strong and active mother of two received her
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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