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Caring for Yourself
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Bone Marrow Transplants
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Clinical Trials
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Drugs
More drugs are available to treat
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…
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In this webinar, Dr. Alejandro Marinos Velarde discusses the risk factors that can cause post transplant relapse along with treatment and management of relapse. He answers questions from the live audience as well.
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Recently, there has been increased mention of
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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“OK,” said Dr. A, as he pivoted away from the screen. “You don’t have to come back anymore.”
He said it without any great sense of ceremony. It was my annual appointment, about 4.5 years after my allogeneic
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…
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Dr. Swapna Thota describes the diagnosis, treatment, and survivorship 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…
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In this webinar, Dr. Tim Pearman discusses fatigue and how it can be best managed. Jenny Finkle demonstrates some gentle exercises you can do to increase your energy level. This was an interactive session.
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In this webinar, Dr. Jamile Shammo discusses the latest in PNH research and treatments.
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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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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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“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…
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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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