Personalized Search
Displaying 721 - 740 of 1090
Webb was in university, playing soccer, when he started noticing a rash and breathlessness during a run. He’d never had either symptom, particularly since he was in such good shape, playing soccer since the age of three.
When he came home for the holidays, his mom, a veterinarian, suspected the rash could be
petechiae
petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots…
Patient Chronicle last updated
.
The AAMDSIF Patient Advisory Council (PAC) was created in 2008. Its purpose is to serve as a resource to the AAMDSIF staff in the development and review of patient education materials, programs and services. Members of the PAC include doctors, nurses, patient educators, patients and caregivers, all of whom have an interest in supporting the needs of people living with
aplastic anemia…
Basic page last updated
.
I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong,…
Patient Chronicle last updated
.
When I 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…
, my world turned upside…
Patient Chronicle last updated
.
This symposium session explores the multidisciplinary approach to patient care, featuring insights from a
social worker
social worker:
A licensed professional trained to help people manage their daily lives, understand and adapt to changes in health and lifestyle. A social worker also will help people find appropriate community resources, healthcare, legal resources, and government…
Webinar last updated
.
This symposium session features presentations on tackling critical challenges in patient care. Topics include the impact of structural racism and other factors on leukemia outcomes, strategies to enhance care for older patients, and PCORI projects advancing diversity, equity, and inclusion (DEI) priorities. This video offers forward-thinking solutions to improve health equity and patient outcomes.
Webinar last updated
.
This symposium session highlights key strategies for fostering inclusivity in
clinical research
clinical research:
A type of research that involves individual persons or a group of people. There are three types of clinical research. Patient-oriented research includes clinical trials which test how a drug, medical device, or treatment approach works in people. Epidemiology or behavioral…
Webinar last updated
.
This symposium session provides updates on the most recent advances in the
pathophysiology
pathophysiology:
Functional changes in the bodies that are associated with or result from disease or injury.
diagnosis and clinical management 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…
Webinar last updated
.
This symposium session provides updates on the most recent advances in the
pathophysiology
pathophysiology:
Functional changes in the bodies that are associated with or result from disease or injury.
diagnosis and clinical management of MDS and AML.
Webinar last updated
.
In this webinar, patients diagnosed 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 blood cell count is low. Most…
discuss their…
Webinar last updated
.
In this webinar, patients diagnosed with PNH discuss their patient journey and share their personal experiences.
Webinar last updated
.
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…
Patient Chronicle last updated
.
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…
Patient Chronicle last updated
.
Caring for Yourself
[[nid:147 filter=intro]]
Therapies
[[nid:4376 filter=intro]]
Bone Marrow Transplants
[[nid:4345 filter=intro]]
Clinical Trials
[[nid:634 filter=intro]]
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…
Basic page last updated
.
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.
Webinar last updated
.
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…
Article last updated
.
“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…
Patient Chronicle last updated
.
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…
Webinar last updated
.
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.
Webinar last updated
.
In this webinar, Dr. Jamile Shammo discusses the latest in PNH research and treatments.
Webinar last updated
.