Global PNH Patient Registry
The Global PNH Patient Registry is a collaborative effort between the
living with disease
Update for Josh: A Change in Treatment is only a Little Unsettling
2021 Treatment update
Pack your Bags and Head to the Hospital - Hailey's Story
“You will need to pack your bags and head to Children’s Hospital, we think it’s leukemia.”
Only a few days after a Complete Blood Count, Christy, Hailey's mom, heard these words from Hailey’s doctor. Hailey had just started kindergarten.
At summer dance camp, Hailey won the award for “Most Tired.” That puzzled her mom. As kindergarten progressed, Christy noticed the fatigue. She assumed that kindergarten must be exhausting for children. Christmas was approaching when she noticed Hailey’s bruises, in odd places on her body.
Life Interrupted – Nick’s Fight Against Aplastic Anemia
Here is Nick's story, as told by his mom, Pamela Karavite
Hereditary MDS
Topic(s)
Myelodysplastic Syndromes (MDS)
Presenter(s)
Lucy Godley, MD, PhD
Lucy Godley, MD, PhD, (UChicago Medicine) discusses the connection between heredity and MDS. While MDS is most often not inherited, there are some genetic mutations and other genetic conditions that can lead to a diagnosis of MDS.
We Made It! – Kristy Shares her Perspective in January 2021
We made it to another treatment day without anyone in our family getting sick! The week leading to treatment day has become pretty worrisome for me. What if someone in our family gets sick with or is exposed to COVID? Josh will not be able to get his infusion within the treatment window and then what? The questions I never thought I'd have to wonder about.
Real-World Treatment Patterns, FLT3 Testing, and Outcomes in AML
Original Publication Date
Article Source
External Web Content
Amer Zeidan, MBBS, MHS, Yale University School of Medicine and Yale Cancer Center, New Haven, Connecticut, discusses updated results from an ongoing retrospective study examining FLT3 testing trends, treatment patterns, and overall survival in patients with relapsed/refractory…
Outcomes of Adding a Fourth Chemotherapy Course in AML
Original Publication Date
Article Source
External Web Content
Administering 2 additional courses of chemotherapy with high-dose cytarabine (Ara-C) after 2 courses of induction therapy improved relapse rates but did not improve overall survival for patients with acute myeloid leukemia (AML), according to research in the Journal of Clinical…
Severe Aplastic Anemia and PNH Diagnoses Came out of Nowhere - Marianna's Story
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.
Bone Marrow Transplant Recipients During Childhood at Increased Risk for Severe Chronic Health Conditions
Original Publication Date
Article Source
External Web Content
Patients who underwent allogeneic bone marrow transplantation (BMT) as children were at increased risk for severe or life-threatening chronic health conditions. These findings were presented during the American Society of Hematology (ASH) 62nd Annual Meeting and Exposition. For…