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Abstract
Over the past 10 years, there has been a marked increase in recognition of the interplay between the intestinal microbiome and the hematopoietic system. Despite their apparent distance in the body, a large literature now supports the relevance of the normal intestinal microbiota to steady-state blood production, affecting both hematopoietic stem and progenitor cells as well as…
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Key Points
SCT from MUD offers superior survival outcomes for 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…
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Key Points
The number of autoHCT and alloHCT grew faster in Non-Hispanic African Americans and Hispanics compared to Non-Hispanic Whites.
Survival after autoHCT and alloHCT improved over time for all racial/ ethnic groups, though African Americans have worse outcomes.
There has been an increase in volume as well as improvement in overall survival (OS) after hematopoietic cell transplantation (…
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On October 14, 2023, Patient and Family Hybrid Conference, in Partnership with Yale Cancer Center, was held in New Haven, CT. Find recordings or materials from this conference here.
Session Recordings:
High-Risk MDS
Managing Low Blood Counts
PNH and Non-Transplant Therapies
Aplastic Anemia and Non-Transplant Therapies
Getting the Right Diagnosis
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Damian was very active when routine blood work showed a problem. But Damian decided that going through treatment would be his mission, even if that meant two transplants. Listen here to his story.
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Join patients, families and caregivers for the 2023 Dallas, TX Patient and Family Conference This event is chaired and organized by Dr. Taha Bat from UT Southwestern.
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…
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AAMDSIF Director of Patient Programs, Leigh Clark, asks Brian about his life before diagnosis, during "watch and wait," through transplant, to now. Listen here to his
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.…
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AAMDSIF Director of Patient Services, Leigh Clark, asks Mario about his journey 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 condition that happens when red…
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Learn about the Americans with Disabilities Act and how it applies to patients. Attorney Chris Mills shares his expertise in this episode.
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What type of documentation do you need to take advantage of the Family Medical Leave Act? Attorney Chris Mills answers questions from Leigh Clark, Director of Paitent Services at AAMDSIF.
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Dr. Mikkael Sekeres describes why patients should request a second opinion about their
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…
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Abstract
Background
Despite widespread use, little is known about how adolescents and young adults (AYA) with cancer use social media (SM). This research characterized use and self-reported SM experiences among AYA with cancer.
Procedure
AYA, aged 12-26 years, receiving cancer care completed a mixed-methods survey regarding SM experiences. Clinical information was obtained from the electronic…
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Key Points
Structural racism (SR) assessed by census tract variables accounts for nearly all Black-white and Hispanic-white disparity in AML survival.
Structural Racism is a stronger mediator of survival disparities than molecular features, co-morbidities, healthcare access and treatment.
Non-Hispanic Black (NHB) and Hispanic patients with
acute myeloid leukemia
acute myeloid leukemia…
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Driven by his mother’s advice and his father’s memory, Richard M. Stone, MD, rose to become a global leader in leukemia care and research.
Growing up, Richard M. Stone, MD, thought he was going to be an attorney like his father, but his direction in life changed when he was 15. His father, Benjamin, developed kidney cancer when Stone was just 5 years old, and 10 years later, the disease…
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PURPOSE:
Patients who have cancer have leveraged the Internet to gain a better understanding of their disease and connect across geographic boundaries with others facing the same challenges. Online cancer communities have developed into resources that highlight new research and evolving care pathways. Combined with increasing health literacy and social media, they have enabled some patients to…
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Editor's note: Here's an update on Mychaela (see Stories of Hope)
Mychaela Lovelace is a sophomore at Michigan State University majoring in kinesiology in the College of Education, and is a scholar and mentor in the Dow STEM Scholars Program.
On April 1, 2008, at the age of 5 I was diagnosed with severe
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh)…
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What is "Chemo Brain" and how is it managed? Find out the best approaches for dealing with this common side effect in this recording with Dr. Jorg Dietrich.
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When should patients be vaccinated, and with which version of the COVID-19 Vaccine? Learn all about how each type of vaccine works and which patients with
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…
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Dr. Bhumika Patel explains why meningitis can occur in patients with PNH and how it is both treated or prevented.
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Key Points
In MDS, health-related quality of life (HRQoL) was worse for vulnerable participants and those with worse prognosis.
Lower-risk MDS was associated with better HRQoL, but this relationship was lost among the vulnerable.
Health-related quality of life (HRQoL) and vulnerability are variably affected in patients with
myelodysplastic syndromes
myelodysplastic syndromes:
(my-eh-…
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