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Paul J Shami, MD of Huntsman Cancer Institute describes the types of therapies that may be used in treating 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…
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Suneet Agarwal, MD, PhD from Boston's Children's Hospital provides essential information for families about inherited
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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Srinivas Tantravahi, MBBS, MRCP (UK) of Huntsman Cancer Institute explains which non-transplant therapies may be considered for treatment 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…
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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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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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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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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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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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“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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Group meets virtually on the first Tuesday of every month from 6:00 - 7:30 pm
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AML (acute myeloid leukemia) is a cancer of the white blood cells. It is defined as having more than 20 out of 100 cells in your
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
being young white blood cells (blasts). About 30 out of 100 people with MDS will develop AML. Certain subtypes of MDS are more likely to become AML…
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The exact number of people who have MDS is unknown, but about 10,300 new cases were reported in the U.S. in 2003. This number is the result of data collected by the Surveillance,
Epidemiology
Epidemiology:
The study of patterns and causes of disease in groups of people. Epidemiology researchers study how many people have a disease, how many new cases are diagnosed each year,…
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MDS treatment is designed to increase the number of healthy cells in your blood (blood count). When your blood counts go up you are less likely to need blood from a donor (transfusion), your quality of life becomes better and your symptoms are not as bad.
Your doctor will look at several issues to find the best treatment plan for you. These include your symptoms, your age, the subtype of MDS you…
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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…
happens when your
bone marrow
bone marrow:
The…
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MDS (myelodysplastic syndromes) is a group of disorders in which your blood-forming
stem cells
stem cells:
Cells in the body that develop into other cells. There are two main sources of stem cells. Embryonic stem cells come from human embryos and are used in medical research. Adult stem cells in the body repair and maintain the organ or tissue in which they are found. Blood-forming (…
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PNH (paroxysmal nocturnal
hemoglobinuria
hemoglobinuria:
(hee-muh-gloe-buh-NYOOR-ee-uh) The presence of hemoglobin in the urine.
) is a very rare blood disease that causes red blood cells to break apart. PNH occurs because of a genetic change to some of your blood-forming
stem cells
stem cells:
Cells in the body that develop into other cells. There are two main…
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These diseases can not be passed down through the genes from parent to child. Most cases 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…
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Before AnnaLeigh got sick, she was a happy, energetic and healthy 4 year old with a huge imagination.
Then she got sick. 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…
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How does my doctor know I have PNH?
PNH is a rare disease. Many doctors have never seen a case of it. So people with PNH may have symptoms for several years before they get a correct diagnosis.
3 Types of Blood Cells
With PNH, your doctor can usually divide your blood cells into 3 types:
PNH I cells, or Type I cells: These cells respond in a healthy way to the
complement system…
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