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Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia.
Blood tests were done, and…
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September 16 through December 20 will stand out in Ashley’s mind.
Forever.
These are the days she spent in the hospital with her feisty three-year-old, Alayna, for conditioning and
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-…
Patient Chronicle last updated
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Each year, approximately 1 in every 1 million infants is diagnosed with pediatric
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.…
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Eltrombopag
Eltrombopag:
What are the possible side effects of eltrombopag (Promacta)?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.
Stop using eltrombopag and call your doctor at once if you have:
…
, an FDA-approved non-peptidyl thrombopoietin receptor agonist is…
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The mRNA COVID-19 Vaccines Are Safe and Effective for Most Patients with Cancer
For most patients with cancer, the mRNA COVID-19 vaccines are safe and effective. This article explains the results of the first study that evaluated the safety and effectiveness of the mRNA vaccines in patients with solid cancers, such as lung, breast, or prostate cancer.
November 2021 – Lung Cancer
Laura Morgan
The…
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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 count for at…
(MDS) and
neutropenia…
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AI is changing the way we find information, communicate, and manage our health. But how can patients use these tools effectively and safely? This webinar will introduce the basics of AI and demonstrate how patients can use safely use AI tools. We'll also discuss the risks of relying on AI for health information and how to recognize its limitations. Questions can be submitted in advance to…
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In this webinar, Dr. Sandrine Niyongere will discuss the latest research presented at EHA and ASCO on MDS and AML. This is an advanced presentation. There will be a Q & A session and questions can be submitted in advance to help@aamds.org.
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In this webinar, you will gain an understanding of symptom burden, recognizing how symptoms affect your daily activities, and exploring strategies to help manage fatigue and other challenges. Learn how to communicate your concerns with your healthcare team and take an active role in improving your quality of life.
Questions can be submitted in advance, help@aamds.org
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In this webinar, Dr. Olson will explore treatment approaches for pediatric
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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AAMDSIF receives support from corporate partners who invest in advancing our mission. Thanks to their financial contributions, we are able to provide answers, support, and hope to patients, their families, and healthcare professionals entrusted with providing quality care.
AAMDSIF Corporate Partners provide financial and in-kind support of programming through sponsorships and grants.…
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During this webinar, Drs. Uma Borate and Alice Mims will discuss lower risk MDS, higher risk MDS and MDS/MPN overlap. They will explore key disease characteristics, current treatment approaches, and considerations for managing these complex myeloid neoplasms. After the presentation, there will be a Q & A session. Please submit your questions in advance to help@aamds.org.
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It has been five years since my
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…
. When my…
Patient Chronicle last updated
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Drs. Xiaoyi Chen and Payal Sojitra discuss diagnosis approaches, key differences and treatment considerations for Lower-Risk MDS, Higher-Risk MDS, and MDS/MPN Overlap.
The session was recorded live at the 2026 AAMDSIF New Brunswick Patient and Family Conference.
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Dr. Jamie Koprvinikar discusses the signs and symptoms of PNH, current diagnostic approaches, available treatment options, and the latest advances in patient care. This session was recorded at the 2026 AAMDSIF New Brunswick Patient and Family Conference.
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Dr. Virian Serei discusses how
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 life) or can be…
is diagnosed,…
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Dr. Srinivasa Samikommu discusses
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…
, the…
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The Global PNH Patient Registry is a collaborative effort between the
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…
Basic page last updated
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During this webinar, Dr. Filippo Milano will discuss
cord blood transplant
cord blood transplant:
A procedure where umbillical cord stem cells are given to the patient through an intravenous (IV) line. Stem cells are collected from an umbilical cord right after the birth of a baby. They are kept frozen until needed. In time, donated stem cells given to the patient begin making new,…
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Patient panel discussions are a chance to meet inspiring people who are living with PNH . Hear firsthand perspectives on the patient journey, challenges, treatment experiences, and what matters most to those living with PNH. Please send your questions in advance to help@aamds.org.
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