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When Shauna was diagnosed with MDS, she knew she would have to leave her home in Alaska for treatment. She chose to move to North Carolina where her extended family lived. With access to specialists there, and having a supportive network, this proved to be an excellent plan.
Shauna began the ATG
protocol
protocol:
An action plan that describes what will be done in a…
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As a typical community college student, Mariana was busy. Classes, studying, day trips, all were part of her life. Yet during one shower, she dropped to the floor, suddenly dizzy. A few weeks later she would be out of breath, with unusual bruises on her skin.
At the end of the semester, she fainted in the grocery store while on vacation. Her parents dropped everything to drive the miles in a…
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Caring for Yourself
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Therapies
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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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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…
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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…
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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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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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