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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…
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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…
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“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…
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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…
led to her career – Behnoush’s story
At 12-years-old,…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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.
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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.
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In this webinar, Dr. Annie Im presents the latest research and treatment of GVHD.
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Doctors can’t identify a specific cause in 9 out of 10 MDS cases. These are called “de novo” MDS, meaning arising without a known cause. The remaining
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…
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You are not alone. The AAMDSIF HelpLine has trained and compassionate information specialists ready to answer your questions and provide the support you need. To speak with an information specialist, please call (800) 747-2820, option 2, or email help@aamds.org.
NOTE: Please be aware that the AAMDSIF HelpLine is an information and referral line…
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MDS classification systems divide MDS into subtypes based on the results of blood and
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
tests. Scoring systems such as IPSS and IPSS-R have been developed to determine the severity of the MDS, probable survival term, and the risk of MDS developing into
acute myeloid leukemia…
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A correct diagnosis is essential to getting the right treatment - a complicated problem for a rare disease for which there is no single test. Because doctors see so few MDS cases, they need to conduct a variety of tests to determine what the patient’s disease is and is not.
Doing a Medical History
To understand what is causing your symptoms and low blood counts, your doctor will start with a…
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