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The purpose of the study is to learn what it is like to have PNH and being treated with for PNH. Individuals who participate in the study will complete an online survey about what it is like to live with PNH. The survey will take about 45 minutes. Participants may also be asked to take part in a one-hour interview by telephone or computer. The interviewer will ask questions about what it is like…
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To her recent friends, her time fighting
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…
“sounds like a…
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In this webinar, Dr. Gail Roboz discusses the Molecular
International Prognostic Scoring System
International Prognostic Scoring System:
A system that turns patient data into a score. The score tells how quickly a myelodysplastic syndrome (MDS) case is progressing and helps predict what may happen with the patient's MDS in the future. Also called IPSS.
(IPSS-M) which is a newly…
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In this webinar, Dr. Lourdes Mendez discusses research most relevant to patients reported over the past year on the biology and treatment on MDS and secondary AML. These studies were presented at the American Society of Hematology (ASH) 2022 meeting. Research findings are explained along with the potential impact of this research on understanding and treating MDS and AML. This is an…
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My name is Marie-Eve. I’m the mother of 3 boys, Milan (17), Nando (14), and Kirill (12). In early 2021, I’d been noticing marks on my oldest son’s body — undeniably and inexplicably large bruises — as big as full moons. My mind would spin in a million different directions, trying to convince myself nothing was amiss. Milan kept telling me he was fine. “I’m okay, mom. Stop worrying.” Then, one…
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Two transplants later, Jenny is off to medical school!
An athlete since preschool, Jenny couldn’t understand the fatigue she’d been having. Only 10 minutes into a soccer game in high school, she had to stop. On an open-gym morning, she felt so horrible she passed out while she was walking to her car to drive home.
When Jenny’s dad came to get her, he took her directly to the…
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Most of my working life was associated with the printing industry. I was apprenticed to printing way back in 1962. I then worked as a printer and later as a teacher in vocational education at the School of Printing and Graphic Arts in Sydney, Australia. Over a period of forty odd years, I worked in close contact with a large variety of hydrocarbon-based solvents, a known cause of
bone marrow…
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In Sept 2021, I had my stillborn son, Nolan. My blood count levels at that time were normal (250 platelets,
Hemoglobin
Hemoglobin:
A protein in the red blood cells. Hemoglobin picks up oxygen in the lungs and brings it to cells in all parts of the body.
10, good neutrophils). From September to April, I began supplements (not under the direction of a physician), increased my…
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Watch this session, featuring Dr. Srinivas Tantravahi, to learn more about different treatment options for patients 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 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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Dr. Salman Fazal will gives a brief AML overview and then answers questions from participants. The question and answer session is recorded here.
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Watch this session to learn techniques for coping after the diagnosis of 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 marrow failure can be acquired (begin any…
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Dr. Vijaya Bhatt discusses Low-Risk MDS in accessible terminology during this session from the 2023 Omaha, NE, Patient and Family Hybrid Conference.
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From the 2023 Omaha Patient and Family Hybrid Conference: PNH Non-Transplant Therapies with Dr. Alex Nester. Learn symptom management and options for therapies in this session which includes questions from the audience.
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Learn how to manage your 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 urine. Hemoglobin is the red part of red…
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Dr. Emma Groarke discusses research most relevant to patients reported over the past year on the biology and treatment 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…
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This session explains why and how patients may be offered a transplant to treat 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…
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Addressing Barriers and Challenges to Patient Care - 2023 Omaha Patient and Family Hybrid Conference
The patient panel discusses this essential topic: Barriers and Challenges to accessing care. Learn their techniques for overcoming these barriers in this session from the Patient and Family Conference.
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High Risk MDS Non-Transplant Therapies Current Therapies and
Clinical Trials
Clinical Trials:
Clinical research is at the heart of all medical advances, identifying new ways to prevent, detect or treat disease. If you have a bone marrow failure disease, you may want to consider taking part in a clinical trial, also called a research study.
Understanding Clinical Trials
Clinical……
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“You will need to pack your bags and head to Children’s Hospital, we think it’s leukemia.”
Only a few days after a Complete Blood Count, Christy, Hailey's mom, heard these words from Hailey’s doctor. Hailey had just started kindergarten.
At summer dance camp, Hailey won the award for “Most Tired.” That puzzled her mom. As kindergarten progressed, Christy noticed the fatigue. She assumed that…
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