Personalized Search
Displaying 881 - 900 of 1086
Mark had no symptoms common to
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…
patients.
Not one…
Patient Chronicle last updated
.
Before diagnosis, Jocelyn’s life was normal, predictable. She was thriving her senior year in college, studying Public Relations. In 2008, she was working, volunteering, attending classes---all the normal activities for a 20-year-old.
But one day that changed. Extreme fatigue set in, making it difficult to walk a single flight of stairs. At first, she dismissed the fatigue to her rigorous…
Patient Chronicle last updated
.
I had an article published in 2017 by AAMDSIF and was asked to update everyone. I will briefly reiterate the first part of my journey and then move forward!
I was originally diagnosed in 2010 with Myelodysplastic Syndrome by an insensitive
oncologist
oncologist:
(on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer.
, who told me…
Patient Chronicle last updated
.
My name is Drew Daniels, and as a child I suffered from
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…
Patient Chronicle last updated
.
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…
led to her career – Behnoush’s story
At 12-years-old,…
Patient Chronicle last updated
.
“Hey, Braeden, we need to go.”
Little did 12-year-old Braden understand that he was headed towards hospital admission.
Earlier that day, Braden nearly passed out on the basketball court. He was a happy, athletic child, who excelled at several sports. His mom, Becki, took him for blood work.
Later, Braeden’s parents heard from the doctor’s office: take him to the Emergency…
Patient Chronicle last updated
.
My name is Mychaela Lovelace. I had been a healthy five-year-old child until one day, when I came home, my mother noticed red dots and bruises on my body. Because she worked in the medical field, she was very concerned. She took me to the doctor, but my pediatrician wasn’t on in the office that day. The doctor I didn’t know said that I was just playing too hard and the dots and bruises were just…
Patient Chronicle last updated
.
Since treatment in July 2019, I have still been transfusion-dependent, receiving both blood and platelets. I get so short of breath when my blood is low. I really hate this disease. Because I’m still transfusion-dependent, I go back and forth for labs, doctor’s appointments, and transfusions.
In September, I started having different problems. I was not feeling well. I kept feeling my heart…
Patient Chronicle last updated
.
My diagnosis with
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 blood cells. A…
Patient Chronicle last updated
.
Traveling with a rare disease
Traveling as a rare disease patient starts long before the booking of tickets. It starts in the physician’s office where travel is planned around treatment regimen. My wife and I recommend that rare disease patients work closely with their physicians before planning travel to ensure that the patient is healthy enough to travel. Reviewing…
Patient Chronicle last updated
.
Alayna was a toddler when she 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…
Patient Chronicle last updated
.
Lisa loved her work.
As a Senior Teacher in the UK, she dedicated herself, her time, and her passion to her job. An average week saw her working 70 hours.
Following a beach holiday in the Canary Islands, she developed a strange rash on the top of her feet. A colleague urged her to go to the doctor.
The doctor suggested she was bleeding under the skin, sending her for blood work. The…
Patient Chronicle last updated
.
Learn about treatments that may be recommended for the 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 to form. Anemia is a condition that happens when red blood cell count is…
Webinar last updated
.
In this webinar, Susan Kirk discusses the latest advances in treating 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…
Webinar last updated
.
If you want a copy of your medical records, you must submit a written request to the hospital or the doctor's office. The law requires that patients provide doctors with written authorization to disclose medical records or the information contained in them. Some hospitals have their own form that needs to be completed. Patients may receive copies of their medical records, however the…
FAQ last updated
.
The article below - Agent Orange, United States Military Veterans, and
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…
Basic page last updated
.
In this webinar, Drs. Kelly Bolton and Eytan Stein discuss CCUS (clonal
cytopenia
cytopenia:
(sie-tuh-PEE-nee-uh) A shortage of one or more blood cell types. Also called a low blood count.
of undetermined significance) and the connection to MDS.
Webinar last updated
.
In this webinar, Dr. Nathan Handley discusses what is integrative medicine and how it can be part of your treatment plan. He answers audience questions in the recording.
Webinar last updated
.
In this webinar, Dr. Annie Im presents the latest research and treatment of GVHD.
Webinar last updated
.
In this webinar, Jane Hamilton discusses how and why it is important for caregivers to practice self care. The entire interactive session was recorded.
Webinar last updated
.