Latest posts tagged with #bleedingdisorder on Bluesky
New on #Haemcast: members of #LFWBD discuss talking to their children about their #bleedingdisorder — and how their concerns aren't always what you might expect.
On podcast platforms, YouTube & here:
https://loom.ly/uvvmvQk
#haemophilia #families #children #podcast
#HemeSky #MedSky
📄 Retiring with a #BleedingDisorder? We've got you covered. Download our new one-pager with practical tips on home adaptations, building routine & staying connected. Free to share! 👉 buff.ly/jBWMeGI
#LivingWellAgeingWell #HealthyAgeing
🎥 How do you prepare for #Retirement with a #BleedingDisorder? Our new #LivingWellAgeingWell Virtual Café Talk covers home adaptations & maintaining independence — with Claire Forde, occupational therapist, & Dr William McKeown, geriatrician. Watch now👇 youtu.be/UfqSgrSwA-4?...
The image is a promotional banner for National Bleeding Disorders Awareness Month in March 2026. It features a person standing in a hallway. Text on the right reads, "Caden B., PAN grant recipient living with hemophilia A." A heart icon is displayed at the top left.
It’s #NationalBleedingDisordersAwarenessMonth! We'd like to honor the strength and resilience of those living with a #BleedingDisorder, like Caden.
From early challenges with #HemophiliaA to discovering new passions, Caden’s journey shows the power of perseverance: https://bit.ly/4jtgSvo
The #EHCRoundTable panel discussion is underway with Dr Cedric Hermans, Dr Maria Elisa Mancuso & patient Marina Pimentel: how can we ensure no patient with an #ExtremelyRare #BleedingDisorder is left behind?
📢 Living with an #ExtremelyRare #BleedingDisorder means complex treatment routines, specialised medication storage, navigating insurance systems & managing education & work life. Patient voices are essential to improving care. #EHCRoundTable
🩸 #ExtremelyRare #BleedingDisorder of the Month: #FactorXDeficiency. 🔎 Often undiagnosed & causing lifelong unpredictable bleeding risks. 📣 Awareness saves lives. Learn more 👉 buff.ly/51eKT7M
On #InternationalWomensDay 2026, we want to give visibility and a voice to women and girls affected by a #BleedingDisorder. Read our #IWD blog here: https://loom.ly/lujMOIw
#GiveToGain #March8 #BleedingDisorders #GenderEquality #ParityOfCare #HemeSky #MedSky
🎙️ Episode 1 on “Adapting Home and Life to Retirement” of our #PeerPioneerPodcast is live! Retirement, home adaptations & ageing well with a #BleedingDisorder. 🗣️ Guests: patient advocates Jim O’Leary & Yannick Collé 📣 Part of the EHC #LivingWellAgeingWell project 👉 buff.ly/nt9DEpS
To all my #bleedingdisorder community peers, happy international day of women & girls in science! We stand on the shoulders of giants within this field, women who have made vast improvements to the treatment & care provision for affected individuals & families. Let's keep it up!
Bleeding disorders are commonly diagnosed in patients presenting with heavy menses at menarche. Check out this month's PAGWebEd Case to review the appropriate work up in the adolescent presenting with heavy menstrual bleeding. #naspag #residenteducation #heavymenses #bleedingdisorder
🩸From plasma to personalised therapy with ultra-long half-life products—Explore 70+ years of innovation in #BleedingDisorder #ReplacementFactorTherapies on #EHCucate 👇
📚 History of Replacement Factor Therapies
📚 Principles of Factor Replacement
📚 Practical Foundations of RFT
🔗 buff.ly/p4xaQ8G
Next week's NBDF Wednesday Webinar offers a unique opportunity to learn about The Odyssey of FX: Voices, Symptoms, and the Evolution of Care from medical and lived experience experts.
Wed, Oct 8
2PM ET
Pre-register (free): www.bleeding.org/events/the-o...
#FactorX
#Ultrarare
#BleedingDisorder
#LEE
#WorldPTDay we highlight the importance of physiotherapy for those living with a #bleedingdisorder #haemophilia Specialized, personalised and supported care from childhood through to later in life, promoting and enabling participation and physical activity for all.
As a dance teacher, Helen is fit and physically active – but living with the rare #bleedingdisorder Factor V deficiency means life isn’t always straightforward. Tune in to the latest episode of #Haemcast to hear her story: https://loom.ly/LfHjSqs
#HaemSky #MedSky #BloodSky
On World Hemophilia Day, I remember my dad - my inspiration and legacy for the advocacy I do for the #bleedingdisorder and #raredisease communities.
I also honor all the women and girls, like myself, who live with bleeding disorders. 🩸
#advocacy #education #familylegacy
Infographic titled 'Must Know Facts For Patients with a Bleeding Disorder in the Emergency Room' with four numbered steps in blue boxes: 1) Tell staff you have a bleeding disorder immediately at check in, 2) Factor replacement should be given as soon as possible for most bleeding, 3) Avoid NSAIDs and aspirin (they make bleeding worse), 4) If you have factor with you, tell staff right away. The HealthEd for Everyone logo appears at the bottom.
4 critical facts everyone with a bleeding disorder should know for the ER.
What other medical situations should we create simple guides for next? Reply with your ideas.
healthedforeveryone.org
@hemophiliamb.bsky.social #BleedingDisorder #PatientEducation #EmergencyRoom
What’s the worst thing about living with a #BleedingDisorder? I don’t think there is one thing above all else, but:
1. #SurvivorGuilt
2. #Depression
3. The long, debilitating march of #Arthritis and #PainManagement
Are all right up there…
If you live with a #BleedingDisorder like #Haemophilia, #VWD, etc., then trying to have a “normal” job, education, relationship, or life in general is an up hill struggle every day of your life.
Just did a mental visualization of my upcoming surgery day going well from start to finish during therapy. My therapist was right, it helps! 🧘🏻♀️ #Endometriosis #Excision #Fibroids #VonWillebrandDisease #hEDS #ChronicPain #ChronicIlness #BleedingDisorder
Photo of mother and young daughter, with quote: "It's a life-changing event, a seismic event. You're given this diagnosis and then sort of sent home to live this new life." - Anna (pseudonym), mother of a girl with Type 3 von Willebrand disease
The first in our blog series about parents of children with a #BleedingDisorder tells the story of Anna, whose daughter was diagnosed with Type 3 #vonWillebrandDisease at six months old. With thanks to Anna (pseudonym) for sharing her experience. Read it here: loom.ly/3esEGP8
#HemeSky #MedSky
Lovely comment from @adamrobertjones that #bleedingdisorder #MDT members are the affected person's cheerleaders, supporting achieving their goals in life. #haemophilia
Interesting read reflecting on different levels of #nursing practice - enhanced, advanced & consultant level. @NursesHna this will be handy when reflecting on our evaluation of UK advanced practice in #bleedingdisorder #nurses
www.rcn.org.uk/Professional...
Shouting into the bluesky void to see who else has #hemophilia or #vonwillebrandsdisease or another #bleedingdisorder hi! I have type 3 vWD! I self inject blood products and deal with the usual joint bleeds and soft tissue bleeds. Reach out if you wanna be pals :)
