#BoneMarrowFailure
LightNews LightNews
stutteringloudly.bsky.social
COVID can affect any organ in the body, including the bone marrow

It’s why #AplasticAnemia / #BoneMarrowFailure patients like Hillary and I need to take COVID seriously

(TBC, Hillary didn’t get COVID and she and her family want to keep it that way)
stutteringloudly.bsky.social Brian (Stuttering Loudly) @stutteringloudly.bsky.social · May 9
Hillary is a fellow #AplasticAnemia pt who may be relapsing 😢

Never experienced what she’s going through - I’m stable but not in remission as my White Blood Cells & platelets are very low

She’s hosting a stem cell drive to find a match for a bone marrow transplant

Please like & repost 👇👇👇

🧵 1/2
A photo of Hillary is on the top right. Text reads: Stem Cells for Life Canadian Blood Services BLOOD PLASMA STEM CELLS ORGANS & TISSUES GIVE THE GIFT OF LIFE FOR Mother's Day IN HONOR OF HILLARY This is Hillary. She has big dreams of being a rockstar. She is always singing. At five years old, she developed Aplastic Anemia (AA) and Paroxysmal Nocturnal Hemoglobinuria (PNH) — two extremely rare and fatal blood disorders if left untreated. She was diagnosed on Mother's Day after receiving several blood and platelet transfusions. Hillary has been in remission for four years but still lives in strict isolation to protect her health. If she relapses, she will require a Bone Marrow Transplant from a stem cell donor. Hillary may be relapsing. She wishes to contribute further to growing the global stem cell registry for herself and other patients in need. In honour of her first historic stem cell event in 2019 which garnered national attention, join Hillary and her family for the Inaugural Mother's Day Stem Cell Drive in Ottawa. Swab your cheek to find out if you're a genetic match for one of the 1,000 people in Canada waiting for a stem cell match. Only a third of the registry is made up of people of mixed ethnicity, making it harder for patients to find a match. Let's increase the odds for those looking for a lifesaving match. Let's #StartWithHillary. Join Canada's Lifeline Register today at blood.ca/StartWithHillary SATURDAY, MAY 10, 2025 FROM 11:00 AM TO 2:00 PM ST. FRANCIS XAVIER CATHOLIC HIGH SCHOOL 3740 Spratt Road, Ottawa. Free parking, refreshments, and giveaways. Must be age 17-35 to register. It takes 10 minutes to get swabbed. Just show up. & startwithhillary.ca Declining platelets are typically one of the first indicators of relapse with Aplastic Anemia. We don't expect many people to understand it -- that's why I'm writing. Her body temperature is elevated. Things could happen really fast for Hillary. If she IS relapsing, she will need many blood and platelet transfusions just to get her to a bone marrow transplant in Toronto. That is ONLY if there is a PERFECT 10/10 match ALREADY in the registry for her. She can't have a partial match. It takes up to eight weeks to get registered to be a donor. We have no idea if Hillary has ANY matches. They will not perform a search until Hillary is critically ill. The matches change. They get used by those in critical need. If there IS a full match there, will they agree to donate? Can we keep her free from infection with zero antibodies? What if there is no match.................... I can't lose her. I'm not strong enough to weather that storm, I'm just not. Sorry, but hope alone is NOT a good strategy for AA patients. Hillary has very clearly instructed me to fight, fight, fight.
May 10, 2025 at 10:30 AM
hemehub.bsky.social
Diagnosis and pre-HCT evaluation in aplastic anemia

#AplasticAnemia #BoneMarrowFailure #PNH #Hematology #MedicalEducation #Transplant #HCT
@ash.hematology.org @ash.edu.hematology.org @hemasphere-journal.bsky.social @isbt.bsky.social @bloodjournals.hematology.org @vjhemonc.bsky.social
July 3, 2025 at 12:08 AM
hemehub.bsky.social
Great to reconnect with the AAMDS Foundation at #ASH25 as we continue to share a commitment to advancing education and support for patients with bone marrow failure disorders.

#AAMDS #Hematology #ASH2025 #HemeHub #BoneMarrowFailure
December 10, 2025 at 1:02 AM
hemehub.bsky.social
🩸🧬 Facts about Inherited Bone Marrow Failure Syndromes: how disruptions in core cellular pathways lead to marrow failure, cancer predisposition, and multi-system disease.

#IBMFS #InheritedBoneMarrowFailure #BoneMarrowFailure #Hematology #MedEd #RareDiseases #BloodDisorders #HemeHub
January 2, 2026 at 10:51 PM
hemehub.bsky.social
🩸Join us for an expert-led session on Inherited Marrow Failure with Marcin Wlodarski, MD and Taha Bat, MD.

Virtual Event | January 9, 2026 | 7:30–8:30AM CT

➡️ Register now: hemehub.org/live-events

➡️ Submit your own cases: hemehub.org/case-submiss...

#Hematology #BoneMarrowFailure #MDS #HEMEHUB
December 12, 2025 at 11:34 PM
hemehub.bsky.social
🩸Today's question! See the answer and explanation on the next slide.

#TERC #TelomereDisorders #IBMFS #BoneMarrowFailure #PulmonaryFibrosis #Hematology #RareDiseases #HEMEHUB
January 24, 2026 at 10:22 PM
hemehub.bsky.social
🩸Happening in 3 weeks!

⮕ Register: hemehub.org/live-webinars

#ASCO2026 #Hematology #Oncology #Leukemia #Lymphoma #MultipleMyeloma #CellularTherapy #BoneMarrowFailure #PlasmaCellDisorders #HemeOnc #HEMEHUB @leukemiaresearch.bsky.social @lymphomaaction.bsky.social @asgct.bsky.social
hemehub.bsky.social hemehub.bsky.social @hemehub.bsky.social · May 12
🩸Join us for Post #ASCO2026 Updates, an expert-led session highlighting the most impactful clinical findings and emerging therapies presented at the 2026 American Society of Clinical Oncology Annual Meeting.

⮕ Register: hemehub.org/live-webinars

#Hematology #Leukemia #Lymphoma #HemeOnc #HEMEHUB
May 21, 2026 at 9:06 PM
hemehub.bsky.social
🩸 Additional facts on diagnostic nuances and clinical presentation in Inherited Bone Marrow Failure Syndromes

#Hematology #BoneMarrowFailure #IBMFS #InheritedDisorders #RareHematology #MedEd #ClinicalUpdates #HemeHub
January 14, 2026 at 12:29 AM
hemehub.bsky.social
💡 Today's question! See the answer and explanation on the next slide.

#Hematology #FanconiAnemia #BMF #HCT #GVHD #BoneMarrowFailure #RareHematology #MedEd #HemeHub
January 14, 2026 at 12:29 AM
hemehub.bsky.social
🩸 Additional insights on emerging therapies & future directions in Inherited Bone Marrow Failure Syndromes

#Hematology #RareDiseases #IBMFS #InheritedBoneMarrowFailure #BoneMarrowFailure #NGS #Hematopathology #Microbiome #GVHD #StemCellTransplant #HEMEHUB
January 30, 2026 at 12:31 AM
hemehub.bsky.social
🩸 Additional insights on long-term complications and surveillance in Inherited Bone Marrow Failure Syndromes

#IBMFS #BoneMarrowFailure #HCT #StemCellTransplant #AvascularNecrosis #GVHD #SquamousCellCarcinoma #Hematology #RareDiseases #HEMEHUB
January 24, 2026 at 10:22 PM
hemehub.bsky.social
Missed our session on Inherited Marrow Failure with Dr. Marcin Wlodarski and Dr. Taha Bat?

The full recording is now available on our YouTube channel!

➡️Watch the full session: youtu.be/cq4S1G8BZDY?...

#InheritedMarrowFailure #BoneMarrowFailure #Hematology #RareDiseases #MDS #HEMEHUB
February 9, 2026 at 9:19 PM
jennye920.bsky.social
New here figured I’d do a intro….Hi 👋 my name is Jenny 39yo in Portland Oregon
Since 2022 I have had some serious health issues- #avascularnecrosis #bowelression #gvh
including two of the rarest forms of #bonemarrowfailure ( #aplasticanemia + #pnh )
I’m also one year post #bonemarrowtransplant
January 22, 2025 at 2:15 AM
hemehub.bsky.social
🩸🌍 HemeHub launches its 2026 educational programming this January, offering expert-led, case-based sessions and timely clinical updates throughout the year.

🔗Visit hemehub.org today to learn more!

#HemeHub #Hematology #BoneMarrowFailure #IBMFS #MedEd #ClinicalUpdates #RareHematology #HEMEHUB
January 14, 2026 at 12:21 AM
hemehub.bsky.social
🩸 This Month on HemeHub: Inherited Bone Marrow Failure Syndromes.

Join us as we explore advances in the understanding and management of inherited bone marrow failure syndromes, including approaches to diagnosis, risk assessment, and patient care.

#HemeHub #Hematology #BoneMarrowFailure
January 2, 2026 at 3:28 AM
hemehub.bsky.social
🩸Happening next week!

⮕ Register: hemehub.org/live-webinars

#Hematology #Oncology #Leukemia #Lymphoma #MultipleMyeloma #CellularTherapy #BoneMarrowFailure #PlasmaCellDisorders #ClinicalUpdates #MedicalEducation #ClinicalResearch #HemeOnc #TranslationalMedicine #HEMEHUB
hemehub.bsky.social hemehub.bsky.social @hemehub.bsky.social · May 12
🩸Join us for Post #ASCO2026 Updates, an expert-led session highlighting the most impactful clinical findings and emerging therapies presented at the 2026 American Society of Clinical Oncology Annual Meeting.

⮕ Register: hemehub.org/live-webinars

#Hematology #Leukemia #Lymphoma #HemeOnc #HEMEHUB
June 1, 2026 at 6:29 PM
hemehub.bsky.social
🔍✨Final questions for PNH & Breakthrough Hemolysis!

Swipe to see the answers and explanations!

#PNH #ParoxysmalNocturnalHemoglobinuria #BreakthroughHemolysis #ComplementSystem #FactorBInhibition #Iptacopan #C5Inhibitors #Hematology #HemeOnc #RareDisease #Thrombosis #BoneMarrowFailure #Hemolysis
May 28, 2026 at 7:48 PM
hemehub.bsky.social
🩸 Facts about #PNH & Breakthrough Hemolysis:

Survival outcomes, #BTH definition variability, biosimilars, and next-generation complement inhibitors.

#ComplementSystem #C5Inhibition #BoneMarrowFailure #Thrombosis #Hemolysis #RenalFailure #Hematology #HemeOnc #MedicalEducation #MedEd #HEMEHUB
May 28, 2026 at 7:46 PM
hemehub.bsky.social
🩸 Facts about #PNH & Breakthrough Hemolysis:

Breakthrough risk on #eculizumab, improved PK control with #ravulizumab, #EVH markers despite #LDH control, and Hb drops signaling marrow failure.

#BTH #ComplementSystem #C5Inhibition #BoneMarrowFailure #Hemoglobin #Hematology #RareDiseases #HEMEHUB
May 21, 2026 at 9:10 PM
hemehub.bsky.social
🩸Happening next month!

⮕ Register: hemehub.org/live-webinars

#ASCO2026 #Hematology #Oncology #Leukemia #Lymphoma #MultipleMyeloma #CellularTherapy #BoneMarrowFailure #PlasmaCellDisorders #ClinicalUpdates #MedicalEducation #ClinicalResearch #HemeOnc #HEMEHUB
hemehub.bsky.social hemehub.bsky.social @hemehub.bsky.social · May 12
🩸Join us for Post #ASCO2026 Updates, an expert-led session highlighting the most impactful clinical findings and emerging therapies presented at the 2026 American Society of Clinical Oncology Annual Meeting.

⮕ Register: hemehub.org/live-webinars

#Hematology #Leukemia #Lymphoma #HemeOnc #HEMEHUB
May 16, 2026 at 8:27 PM
hemehub.bsky.social
🩸✨Today’s questions!

Swipe to see the answers and explanations!

#PNH #Hematopoiesis #Granulocytes #BreakthroughHemolysis #BTH #RedBloodCells #ComplementSystem #C5Inhibitors #Ravulizumab #Eculizumab #ComplementBlockade #Hematology #HemeOnc #RareDiseases #BoneMarrowFailure #HEMEHUB
May 14, 2026 at 8:57 PM
hemehub.bsky.social
🩸 Facts about #PNH & Breakthrough Hemolysis:

Iron loss from chronic IVH, meningococcal infection risk with complement blockade, and factors driving breakthrough hemolysis severity.

#ComplementSystem #C3Inhibitors #BreakthroughHemolysis #BoneMarrowFailure #RareDiseases #Hematology #HemeOnc #HEMEHUB
May 14, 2026 at 8:55 PM
hemehub.bsky.social
📣🩸Don’t miss our live webinar on Post #ASCO2026 Updates, highlighting key advances across #leukemia, #lymphoma, plasma cell disorders, and bone marrow failure syndromes!

⮕ Register: hemehub.org/live-webinars

#Hematology #Oncology #MultipleMyeloma #BoneMarrowFailure #PlasmaCellDisorders #HEMEHUB
hemehub.bsky.social hemehub.bsky.social @hemehub.bsky.social · May 12
🩸Join us for Post #ASCO2026 Updates, an expert-led session highlighting the most impactful clinical findings and emerging therapies presented at the 2026 American Society of Clinical Oncology Annual Meeting.

⮕ Register: hemehub.org/live-webinars

#Hematology #Leukemia #Lymphoma #HemeOnc #HEMEHUB
May 14, 2026 at 8:52 PM
hemehub.bsky.social
🩸 Facts about PNH & Breakthrough Hemolysis:

Proximal inhibition, complement regulation, and evolving strategies in disease control.

#PNH #ComplementSystem #ComplementInhibition #C3Inhibitors #Pegcetacoplan #Iptacopan #BoneMarrowFailure #RareDiseases #Hematology #HemeOnc #MedicalEducation #HEMEHUB
May 12, 2026 at 1:40 AM
hemehub.bsky.social
🩸 Facts about PNH & Breakthrough Hemolysis:

Understanding the immune-driven origins of #PNH, its link to aplastic anemia, and the role of complement inhibition in preventing breakthrough hemolysis.

#Hematology #AplasticAnemia #BoneMarrowFailure @thjournal.bsky.social @htrstoday.bsky.social
May 6, 2026 at 7:35 PM