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In this webinar, Dr. Abhay Singh discusses the latest MDS and AML research presented at the 2024 EHA and ASCO meetings. This is an advanced educational presentation.
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I was diagnosed with PNH fifteen years ago, at the age of 51. This is my story.
I grew up on the West Side of Los Angeles. Raised by a single parent, my mother was a strong woman of faith. My father, the eldest of twelve, died of a heart attack when I was about nine months old. Four of his six brothers, and a couple of my cousins died at an early age. My mother…
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Sarah 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…
in fall of 2015. Shortly…
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By the time he was 10 years old, Xisto had earned a Black Belt in taekwando. He was traveling to, and winning, competitions.
Yet he was tired enough to fall asleep at unusual times. Then the
petechiae
petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots on the skin, caused by bleeding. It is often a symptom of a low platelet count.
developed, all over his feet and hips…
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Hi! My name is Stefania, I am 31 years old, and I am from Ecuador. My life changed in July 2018 when I was diagnosed with very 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…
Patient Chronicle last updated
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“You must go to Children’s Hospital now.”
Ninth grader Patrick McLaughlin was surprised, but followed his mom’s lead, who calmly drove to the Emergency Department while disguising her fear and confusion.
Earlier that week, while Ellie was on a business trip, her elder son, Liam, called. “Mom, Paddy’s still sleeping after early dismissal.” It was 8:30pm. At that moment, she knew that she…
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Patients can make a difference in the development of future treatments and the improvement of outcomes by participating in research. Check out the sections here to discover if any of these options are suitable for you.
Clinical Trials and Studies feature
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood…
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Judi Wilkinson of Ormond Beach, Florida, has worked as a mortgage underwriter, 911 operator and auto racing team manager. She was accustomed to handling tough situations, as well as emergencies.
But when the strong and active mother of two received her
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…
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29-year-old Ricky Smith, Jr. has had
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…
disease for…
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19-year-old Anna Sobon had been a typical college sophomore, active and full of plans about making her dreams come true.
When she began to get increasingly tired, she thought it was due to her hectic schedule or maybe some lingering after-effects of her bout with mononucleosis the previous summer. Even as her strength was dwindling, Anna stayed determined to keep up with her daily routines…
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Vincent Rusak of New Kensington, PA, traveled extensively during his 26-year career as an expert electronic service technician. For 15 of those years, he was also a regular blood donor in his community.
His father’s quadruple bypass surgery, as well as a deep compassion for his fellow man, were Vince's motivation for contributing to his local blood banks every six to nine months. Little did he…
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As a young man, Barry Gore was a top-40 celebrity disc jockey, complete with an adoring fan club in the Greater Boston area. But like most first jobs, it lost its luster and he settled into sales and marketing while getting his MBA.
He became the owner of a prosperous machine manufacturing business that his son now runs. But when he was still in his fifties, a family history of heart disease…
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Tyler Andrews has been passionate about running for most of his life. The 26-year-old turned it into his profession and has competed all over the world.
But the biggest competition he ever faced was at the tender age of six, when he was confronted 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…
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Homecoming queen and top student Briana Donis always wanted to go to the University of Texas at Austin.
“I was having a pretty awesome year. I was very well known at school and I had a boyfriend.” She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started.
“When I would cut myself, like it would be just…
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I am thrilled because I have already written two articles for AAMDS and am now writing a third one at their request. I am so grateful to still be well enough to do this.
The first article, written in 2017, talked about my initial diagnosis in 2010 of MDS del5Q. MDS is separated into 5 categories and typically patients live the longest with this extremely rare type.
I had a very insensitive…
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In this webinar, Dr. Thomas Coates will discuss
blood transfusions
blood transfusions:
A blood transfusion is a safe and common procedure. Most people who have a bone marrow failure disease like aplastic anemia, MDS or PNH will receive at least one blood transfusion. When you receive a blood transfusion, parts of blood from a donor are put into your bloodstream. This can help some…
and…
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In this webinar, Dr. David Dingli presents the latest research presented the American Society of Hematology meeting on
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…
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In this webinar, Dr. Nathan Punwani discusses the development of secondary AML from high risk MDS, treatment options and the quality of life impact for patients.
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VOYDEYA is a prescription medicine used along with ravulizumab or
eculizumab
eculizumab:
Eculizumab (Soliris ®) is given as an IV into a vein at the doctor’s office or at a special center. The procedure usually takes about 35 minutes. You will probably get an IV once a week for the first 4 weeks. Starting in the 5th week, you will get a slightly higher dose of Soliris every 2 weeks…
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EMPAVELI® is the first PNH treatment that binds to complement protein C3. It was approved by the Food and Drug Administration in May 2021 for treating adult patients 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.…
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