Podcasts about vwd

Potential Medicaid cuts are looming that could affect our community. Hear how you can take action! We also have exciting news about a clinical trial for von Willebrand's disease and a special community story from Kayla Klein and her mother, Nancy Rodgers. Plus, Patrick has some fantastic updates from the WFH's Comprehensive Care Summit in Dubai.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Medicaid Cuts - Take Action Today!   Please call or email the offices you visited in March and remind your lawmakers that Medicaid is a lifeline: ask them to reject Medicaid funding cuts and other policies that would reduce coverage and disrupt care. For email, contact the staffer you met with at Washington Days (check your sent mail for the thank you notes). If you no longer have contact information for your lawmakers' offices, you can call the Capitol switchboard at 202.224.3121 and ask them to connect you. Say or email:   I am [calling/emailing] as a member of the bleeding disorders community and as a constituent to ask you to reject cuts to federal Medicaid funding. I am relying on you, as my Senator/Representative in Congress, to protect Medicaid from funding cuts and other policies that would reduce coverage and care.    Medicaid covers life-sustaining treatment and care for up to one-third of the bleeding disorders community. Without Medicaid, low-income people with bleeding disorders will have no access to the regular care they need to prevent or treat painful, debilitating, and potentially life-threatening bleeding episodes. People will experience preventable health complications – and overall healthcare costs will rise.   Please stand with the bleeding disorders community and so many others who rely on Medicaid, and reject cuts to this program that provides essential coverage to vulnerable individuals across the country.   ** Hemab Therapeutics Announces Start of Velora Pioneer, a Phase 1/2 Clinical Trial Investigating HMB-002 for the Treatment of Von Willebrand Disease: Press Release   More information about the vWD clinical trial participation Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

Dr. Ben Samelson-Jones is on the show highlighting the advances of Gene Therapy in Hemophilia B and we'll also share an exciting staffing update for Star Therapeutics, a biotech with an encouraging vWD pipeline. We'll tell ya all about it!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

“Men can have vWD and women can have hemophilia, I'll say it again -” Hanna is a passionate advocate within the Bleeding Disorders Community. In today's day and age - stating things that are true is important. Hanna has led the way since youth in progressing conversations, and acting as a voice for those unable to voice their struggle.    FLOW is straight talk about extreme periods, with new episodes the second Thursday of each month. Tune in for tips for self study, shared discoveries and to expand menstrual awareness.    Program Notes:   Guest + Links Mentioned in this Episode: Hanna Beary  Better You Know: https://www.cdc.gov/ncbddd/blooddisorders/women/materials/ NBDF's Victory for Women with Bleeding Disorders Bleeding DIsorders of the Heartland Bad Blood - Documentary Ricky Ray Relief Act National Library of Medicine: Ricky Ray Relief Act   How's Your Flow? We wanna know (Calendly link): https://calendly.com/flowtalk/flow-talk-period-pain-stories   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills    HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/2rnK    Connect with BloodStream Media: Find all of our bleeding disorders podcasts on  BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited's Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

Ross falls through the wardrobe into VWD, we reintroduce ourselves, reveal our surprising connections, and unveil our new format PD (Post Dibley). We are the Vicars Watch Dibley - three real priests who talk about pop culture and what it's taught us about life, faith and the church. We've watched Dibley, and now we're watching everything else! ------- Follow us: Instagram @vicarswatchdibley | Twitter / X @VicarsWatch | Facebook @VicarsWatchDibley Contact us by email at vicarswatchdibley@gmail.com ------- Hosts: Revd Ruthi Gibbons (X @RevRuthi, Instagram @ruthigibbons) Revd Ross Meikle (X @meikle_treacle, Instagram @storytellerross) Revd Cate Thomson (Instagram @revdcate) Producer + music and editing by Revd Natalie Gibbons. ------ Any opinions expressed in this episode are our own and do not necessarily represent those of the Church of England or any other organisations with which we are affiliated. --- Send in a voice message: https://podcasters.spotify.com/pod/show/vicars-watch/message

This week in our hematological consultation series, we continue our discussion on von Willebrand disease (vWD), this time focusing on the type 2 subtypes and we also discuss management.In case you missed it, we recommend checking out episode 069 for Part I of this vWD series, covering taking a bleeding history and about Type 1 and Type 3 disease.Content: - What testing do we send for suspected vWD (refresher)- What to do if type 2 vWD is suspected?- What are the different subtypes of Type 2 vWD?- What is "platelet-type vWD"? - What is the approach to perioperative management? ** Want to review the show notes for this episode and others? Check out our website: https://www.thefellowoncall.com/our-episodesLove what you hear? Tell a friend and leave a review on our podcast streaming platforms!Twitter: @TheFellowOnCallInstagram: @TheFellowOnCallListen in on: Apple Podcast, Spotify, and Google Podcast

We resume our hematological consultation series with an overview of von Willebrand disease, the most common inherited bleeding disorder. In this episode, we talk about the initial steps we should take to evaluate suspected von Willebrand disease (vWD) and how to differentiate the various subtypes. We will focus on vWD type 1 and 3! Be sure to tune in next week as we discuss vWD type 2 and management.Content: - Taking a bleeding history - What is von Willebrand factor? - What tests should we order for diagnosis? - What are the different types of vWD?- What is the DDAVP challenge? ** Want to review the show notes for this episode and others? Check out our website: https://www.thefellowoncall.com/our-episodesLove what you hear? Tell a friend and leave a review on our podcast streaming platforms!Twitter: @TheFellowOnCallInstagram: @TheFellowOnCallListen in on: Apple Podcast, Spotify, and Google Podcast

In this episode, Director of Community Engagement, Luke Pembroke, and Director of Research, Kate Khair spoke with community advocates Sunny Maini and Hannah Yarnalll. Sunny and Hannah share their experiences of living with von Willebrand Disorder (VWD), their journey in to the world of advocacy and tell us about their latest venture establishing the VWD working group through The Haemophilia Society UK. For more information about the VWD working group and their upcoming event in Sheffield on 26th August, you can contact Sunny via email: sunny@haemophilia.org.uk

Von Willebrand Disease (VWD) is the most common inherited bleeding disorder among American women, and it may present with a history of mucocutaneous bleeding patterns. Ideally, women should be screened/identified with this condition prior to pregnancy- but that is not always the case. How does VWD affect delivery? Is this a cause of immediate PPH? In this episode we will review the clinical manifestations of VWD in pregnancy. We will: 1. review appropriate labs tests for this evaluation, 2. summarize the recommended management peripartum, and 3. discuss if a C-Section is required in the affected patient. LOTS of material is covered in this episode! (References: ACOG's Clinicals Expert Series, March 2023; ACOG CO 785).

Jessica Foley, MD is a pediatric hematologist and oncologist with a passion for camp. Join Sarah and Jessica on FLOW as they deep dive into vWD diagnosis challenges, treatment options, and the joys of hemophilia camp - all in honor of March / Bleeding Disorders Awareness month.   FLOW is straight talk about extreme periods, with new episodes the second Thursday of each month. Tune in for tips for self study, shared discoveries and to expand menstrual awareness.    Program Notes:   vWD Resources NHF - National Hemophilia Foundation WFH - World Federation of Hemophilia  Foundation for Women & Girls with Bleeding Disorders Let's Talk Period   HOST: Jessica RIchmond Website: jrich.online IG, @jessicalaurenrichmond  Twitter @geniuspills    HOST: Sarah Watson Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG @swsxtherapy Twitter @swsextherapy   FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/2rnK    Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited's Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

This talk goes over the most common causes of inhirted bleeding disorders. There are two major types of hemophilia – deficiency in factor VIII and IX – which predominant occur in men. Hemophilia A is deficiency of factor VIII and is the most common form of hemophilia treated with factor concentrate. Hemophilia B is less common but treatment principles are the same. There are multiple types of von Willebrand Disease as this is a complex molecular that both carries factor VIII and forms large multimers essential for platelet function. Mild forms of vWD can be treated by desmopressin but von Willebrand factor is needed for more severe types.

COR2ED Medical Education: Haematologists Prof. Ana Boban and Dr Jonathan Roberts discuss how the type of von Willebrand disease (VWD) impacts the treatment. In this podcast, aimed at healthcare professionals outside of haematology, the experts summarise the key treatment options for VWD and discuss how they make treatment decisions on a daily basis, including treatments they tend to avoid in certain types of the disease. They also consider management in some specific clinical scenarios, including a spontaneous bleed, surgery, and heavy menstrual bleeding. Prof. Ana Boban is Head of the Haemophilia Centre, University Hospital Centre Zagreb, Croatia, and Dr Jonathan Roberts is Associate Medical Director, Associate Research Director, Bleeding and Clotting Disorders Institute, Peoria, IL, USA.

This week's episode will be focusing on a bleeding disorder, Von Willebrand disease (VWD). We will go over all the important details on the diagnosis, types of VWD (& ways to remember them!) as well as treatment options.

In today's episode I had the pleasure of speaking with my Hematologist, Dr. Michelle Sholzberg. She is a clinician-scientist with a focus on coagulation, the Division Head of Hematology-Oncology and the Medical Director of the Coagulation Laboratory at St. Michael's Hospital. Listen in as we discuss her current research projects that she is focused on as well as a review and discussion of current treatment options used in those with all types of VWD.  For more information feel free to contact the Comprehensive Hemophilia Care Centre at St. Michael's Hospital in Toronto. https://unityhealth.to/areas-of-care/programs-and-clinics/oncology-and-endoscopy/#st-michaels-hospital-hemophilia-clinic-5   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Does your head spin when you look at a von Willebrand panel? In this episode, Dr. Angela Weyand teaches us about the most typical presentations of VWD, how to interpret those pesky antigen and activity levels, and how DDAVP works for bleeds.

Von Willebrand disease (VWD) is a hereditary quantitative deficiency or functional abnormality of von Willebrand factor (VWF), which causes platelet dysfunction. Bleeding tendency is usually mild in the most common types, but it can be severe and present with factor VIII deficiency as well as platelet dysfunction in the rarer subtypes. It is diagnosed based on testing von willebrand factor antigen levels which is low in most subtypes, VWF activity which is low in most subtypes and VWF multimer distribution which is abnormal in a small number of the subtypes.  Treatment depends on the degree of bleeding. Mild mucosal bleeding can often be managed with tranexamic acid alone to help stabilise the clots that are present. Desmopressin might be used in more significant bleeding or perioperatively. Occasionally von willebrand factor concentrates might need to be given. Follow us on Instagram @yourekiddingrightdoctors Our email is yourekiddingrightpod@gmail.com Make sure you hit SUBSCRIBE/FOLLOW so you don't miss any episodes and RATE to help other people find us! (This isn't individual medical advice, please use your own clinical judgement and local guidelines when caring for your patients)

Flow's Sarah and Jessica sit down to discuss the fact that abortion is healthcare - and embark on a series of “straight talk about abortion” with part 1: Abortion Is Healthcare.  There are a myriad of medical situations in which pregnancy is a short-term experience. Review helpful terminology to engage in conversation. Upcoming episodes focus on: clinical situations that may call for abortion, necessary and currently missing reproductive health education, and current activism going on to support suffering menstruators.  Tune in for tips for self study, shared discoveries and to be part of the growing menstrual awareness movement! FLOW is straight talk about extreme periods, with new episodes the second Thursday of each month.   Program Notes:   Abortion Content and Resources This American Life - https://www.thisamericanlife.org/774/the-pink-house-at-the-center-of-the-world Shameless Mom Academy - https://shamelessmom.com/episode/amanda-kingsley-speaking-light-into-abortion/ Shout Your Abortion - https://shoutyourabortion.com/ Abortion Fund Network - https://abortionfunds.org/   HOST: Jessica RIchmond: Website: jrich.online IG, @jessicalaurenrichmond    HOST: Sarah Watson: Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG, @swsxtherapy Twitter @swsextherapy   FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/2rnK    Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited's Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

FLOW's Jessica and Sarah sit down with Mimi Millard of DeLune!   DeLune's Whole Cycle support products use evidence-based research and the team is passionate about furthering clinical research into the period burden and the avoidance/endurance strategy that is common, but not normal!   Tune in for tips for self study, shared discoveries and to be part of the growing menstrual awareness movement! FLOW is  with straight talk about extreme periods; monthly episodes the second Thursday of each month!   Program Notes:   Flow with DeLune  www.Delune.co / use code FLOWPOD20 for 20% off! www.periodcramps.com / take the quiz, help the research study!   HOST: Jessica RIchmond: Website: jrich.online IG, @jessicalaurenrichmond    HOST: Sarah Watson: Website: sarahwatsonlpc.com Podcast: Behind The Bedroom Door Facebook: @sarahwatsonlpcsextherapy IG, @swsxtherapy   FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/2rnK    Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited's Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

I met Richelle through Instagram and the page she's created to raise awareness about VWD after the diagnosis of her daughter with Type 3 von Willebrands. Listen in as Richelle shares their family story and discusses topics from diagnosis to ports to the value of social media for finding that community, infomation and support.  Be sure to follow @rallyforrielynn and feel free to connect with Richelle through that page.   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Women with mild hemophilia, vWD, and gene therapy were topics of discussion at The World Federation of Hemophilia's World Congress that took place earlier this month in Montreal, Canada and Patrick and Amy were there! Hear about it as well as planning for the summer and our latest Let's Talk mental health segment led by Believe Limited's Joshua Sterling Bragg on loss.   Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   The Bloodstream Podcast is brought to you in part by a new educational gene therapy resource from CSL Behring called HemEvolution.  To learn more, check out www.HemEvolution.com   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Vascular Ehlers Danlos Syndrome (Vascular EDS/VEDS) is just one of 13 sub-types of a group of connective tissue disorders called Ehlers Danlos. Due to a deficiency in collagen the walls of blood vessels are prone to dissection, rupture or aneurysm with potentially fatal consequences. However considering the serious complications of vascular EDS its presentation can be subtle and hard to spot. Clare, Jared and Dr Paddy Coughlin explain how patients with vascular EDS may present and what challenges they face. Trigger warning - descriptions of vascular events and bleeding.And here endeth Season 2! Join us in September for the next Season! LinksAccompanying blog with images about vascular EDS. Annabelle's Challenge aims to promote awareness and medical research into the rare, life-threatening and incurable genetic condition Vascular Ehlers-Danlos Syndrome (Vascular EDS). It was founded in 2013 by Jared and Sarah Griffin, after their daughter Annabelle was diagnosed with Vascular EDS at the age of 3.Please watch this short video where you can see Jared and Sarah talk about Annabelle's diagnosis. As well as hear other families share their stories.Ehlers Danlos Support UK (EDS UK) was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes.  The charity represents and supports people with all types of EDS.Ehlers Danlos GP Toolkit Orphanet's description of Vascular Ehlers DanlosLoeys-Dietz is another connective tissue disorder that Paddy mentioned. Loyes-Dietz also causes aneurysms as well as other features. Von Willebrand Disorder (VWD) is a common misdiagnosis given to people with vascular EDS. VWD is a clotting disorder unlike vascular EDS which is a connective tissue disorder.  People with VWD have low levels of a protein involved in blood clotting, von Willebrand Factor (VWF) in their blood, or their VWF is dysfunctional, so it takes longer for the clotting process to work and for bleeding to stop.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.

Diagnosed at 9months of age, Silvana has grown up in the bleeding disorders community. But growing up as a woman of colour with severe VWD has been a challenge. Listen as we disucss issues of mental health, medical trauma, advocacy and the importance of seeking out and connecting with other women in the bleeding disorder community. Be sure to follow and connect with Silvana on her Instagram page @RadishDoodles. And find out more information about Bleeding Disorders at the link below. www.hemophilia.ca Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Go online to PeerView.com/NRZ860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. In this activity, a hematology expert discusses the diagnostic assessment and management of von Willebrand disease, as well as available treatment options and strategies for shared decision-making. Upon completion of this accredited CE activity, participants should be better able to: Review the clinical presentation, phenotypic classification, and diagnostic workup of von Willebrand disease (VWD), Assess the latest evidence for available VWD treatments, including recombinant VW factor and other novel strategies, Engage patients and caregivers in shared decision-making to personalize VWD treatment, promote adherence, and minimize complications associated with poor adherence.

Amy and Patrick discuss how growing up with a chronic illness can lead to feeling “less than,” highlight recent articles on mild hemophilia and women in the community, and present the latest installment of Let's Talk mental health with Joshua Sterling Bragg, featuring Dr. Emily Wheat.   Show Notes: PRESENTING SPONSOR: Takeda LET'S TALK SEGMENT SPONSOR: Sanofi Genzyme SEGMENT SPONSOR: Genentech BLOODSTREAM MEDIA: CHECK OUT all our stuff   LINKS FROM THIS EPISODE: Females Account for 1 in 5 Mild Hemophilia Cases at US Centers Syrians Claim First Case of Girl With Both Hemophilia A and C   Find our Hosts on Social: @patrickjameslynch @boardo87   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  Check out Believe Limited's Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

Andra James, MD, MPH is a Professor of Obstetrics & Gynecology, Division of Maternal-Fetal Medicine at Duke University Center, and consulting professor of Medicine, Division of Hematology. She is also the founder of Duke University's Women's Hemostasis and Thrombosis Clinic. Dr. James and Machaon Diagnostics' Medical Director, Dr. Brad Lewis, discuss the various approaches to monitoring bleeding disorders (VWD, Platelet Disorders and mild Hemophilia) during critical time frames before, during & after pregnancy in women.  Tracking factor levels and having a good plan in place for time of delivery is important. OB/GYNs and Hematologists can partner to provide the best care for patients at every step.

Patrick and Amy are joined by Julie Kim, President of the Plasma-Derived Therapies Business Unit for Takeda, to discuss Takeda’s 5-year commitment to the WFH Humanitarian Aid Program. Then later in the show they’re joined by frequent contributor Alexa Abreu and her sister Juliemar - a former Teen Impact Honoree - to discuss the uncelebrated accomplishments of our youth and what supporting young people should actually look like.   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   NOMINATIONS for the Teen Impact Awards: http://bit.ly/TIA2021bsp TAKEDA joins WFH’s Humanitarian Aid Program: bit.ly/WFHTakeda2021

Amy and Patrick speak with students at Brown University who’ve been working with Save One Life in honor of World Hemophilia Day, and USP7 Foundation Chairman Bo Bigelow joins to discuss important news in the USP7 world on the heels of Hao-Fountain Syndrome Awareness Day.    Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   Breaking Through: https://bit.ly/3smEGpN Teen Impact Awards: https://bit.ly/2Q9zXue   Help Save One Life: https://bit.ly/3elfs6f   Stronger Every Day Podcast: https://bit.ly/3tmui2v USP7 Foundation: https://bit.ly/2Q6oEmH DISORDER Rare Disease Film Festival: https://bit.ly/3gcv7qK

Amy and Patrick review MASAC’s new recommendations for women with bleeding disorders, provide an important update on a recent clinical trial investigation, and discuss bullying during COVID.  Then filmmaker Ryan Gielen joins to talk about his new documentary, My Beautiful Stutter, now streaming on discovery+.   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   MY BEAUTIFUL STUTTER: http://bit.ly/MBSLetMeSpeak   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   American Rescue Plan (ARP) info from NHF: http://bit.ly/NHFARP2021 Gene Therapy Clinical Trial Investigation: http://bit.ly/GTinvestigation2021 MASAC recommendations for women: http://bit.ly/MASACwomen Cyberbullying in India: http://bit.ly/CyberIndia2021

In episode 04 “What else could it be…?” our Flow team takes a look at other conditions that affect menstruation. Christie and Jessica speak with Nkem Osian of The White Dress Project (fibroids advocacy organization @wecanwearwhite) and learn about PMDD / PCOS / other menstrual-acronyms from the incredible edu-tainer Doctor Kerry-Anne Perkins (@callmedoctor.p)! Program Notes: Menstruators can experience extreme conditions - sometimes after years of regular cycle bleeding and sometimes only after long-seeking a diagnosis… Flow's Christie & Jessica have discussed normal, abnormal, and disordered menstrual-bleeding - in this episode they discuss “What else could it be…. that's going on with this body?” LINKS: The White Dress Project: www.thewhitedressproject.org, Instagram @wecanwearwhite Dr. Kerry-Anne Perkins is on Instagram @callmedoctor.p / Tik-Tok @callmedoctor.p Christie's Family History Guide Sisterhood App by HFA Find our Hosts' on Instagram:  @jessicalaurenrichmond @christie_publichealth FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/CkF2 Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited's Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

It’s the Final Thursday of Bleeding Disorders Awareness Month, and that means Josh is back for his final moment for mental health. Today’s subject is Trauma, and he is joined as usual by Debbie De La Riva, who gives some expert opinions on where Trauma comes from, how it presents in the bleeding disorders community, and what we can do after experiencing a traumatic event. Let’s have a moment.   Mental Health First Aid Class:https://www.mentalhealthfirstaid.org/ Mental Health America Surveys:https://screening.mhanational.org/screening-tools/ Free Support Groups Depression BiPolar Support Alliance:https://www.dbsalliance.org/ New Harbinger Publications:https://www.newharbinger.com/

Earlier this year, clinical practice guidelines for the diagnosis and management of von Willebrand disease (VWD) were published in Blood Advances. The guidelines (https://bit.ly/2OIfKLE) are a collaborative effort from the American Society of Hematology, the International Society on Thrombosis and Haemostasis, the National Hemophilia Foundation, and the World Federation of Hemophilia. Guideline author Paula James, MD, of Queens University, Kingston, Ont., reviews some of the recommendations in these guidelines with host David H. Henry, MD, in this episode. Case discussion A patient presents with the complaint of heavy menstrual bleeding, which could indicate a bleeding disorder such as VWD. How does one diagnose or rule out VWD? Tests to order include CBC, prothrombin time (PT), and partial thromboplastin time (PTT). Results of CBC, PT, and PTT could be normal, which would necessitate special testing to specifically look at factor VIII and von Willebrand factor (VWF). A patient’s family history may be helpful, as most types of VWD are autosomal dominant, though two subtypes are recessive. Diagnostic evaluation of VWD VWF is the chaperone protein for factor VIII in the intrinsic pathway, which is measured by the PTT. In more severe forms of VWD, the PTT is prolonged because of factor VIII. VWF is measured separately because it is not reflected in the PT or PTT. The recommendation is to measure VWF antigen and employ a functional assay to see how well VWF binds platelets. The recommendation in the new guidelines is to use the GPIbM assay rather than the ristocetin cofactor assay. Many labs in the United States are still using the ristocetin cofactor assay. However, in Canada, Europe, and other parts of the world, many labs have moved to a newer assay that is automated. It has a much lower coefficient of variation and fewer issues with measurement of VWF in Black populations, which is a major issue with the cofactor assay. Types of VWD Type 1 VWD is characterized by a decreased amount of VWF. Type 1 patients have low VWF antigen and low platelet-dependent VWF function to a similar degree, with low or normal factor VIII. Type 2 VWD is characterized by aberrant VWF. The functional assay is a lot lower than VWF antigen. The platelet-dependent function to VWF antigen ratio cutoff is 0.7. Further testing is warranted to determine subtypes (2A, 2B, 2N, or 2M), including VWF multimers. Genetic testing can be helpful to further delineate subtypes. Type 3 VWD is characterized by the absence of VWF. The patient will have a VWF antigen level of 0, platelet-dependent VWF function of 0, and a reduced factor VIII level (usually less than 10%). Pregnant patients with VWD There is a protective adaptation in pregnancy, in which factors normalize in the third trimester, which works to prevent hemorrhage at delivery. This protective effect is because of the hormonal changes of pregnancy, and it is seen in patients with milder forms of VWD. WVF levels peak within 8-24 hours after delivery and then slowly return to baseline. There is a risk of delayed postpartum hemorrhage once VWF levels return to baseline, which tends to happen 7-14 days postpartum. Procedural planning: Desmopressin challenge test Desmopressin causes the release of VWF from the Weibel-Palade bodies of the endothelium, and it can be used as prophylaxis or treatment of bleeding in type 1 VWD. The desmopressin challenge test is used to check how the patient responds to desmopressin when well, to predict the patient’s response after an anticipated procedure. The test involves measuring VWF levels before desmopressin is given and at 1 hour, 2 hours, and 4 hours after desmopressin administration. The idea is to measure the magnitude of increase in VWF levels and observe how sustained that increase is to predict the patient’s response to desmopressin after future procedures. There is a subset of patients with type 1 VWD who have increased clearance of VWF that causes their decreased VWF levels. They may not have a sustained plateau in the VWF level after desmopressin, which emphasizes why testing as far as 4 hours after desmopressin administration is important. The dose of desmopressin given in this test is typically 0.3-0.4 mcg/kg. Recommendations for preprocedure prophylaxis for type 1 VWD Minor procedures (e.g., wisdom tooth extraction) The patient should receive an antifibrinolytic agent, such as tranexamic acid or aminocaproic acid, 2 hours before the procedure, followed by desmopressin 30-60 minutes prior to the procedure. After the procedure, the patient should continue to receive the antifibrinolytic agent for 3-4 days. Major procedures/surgeries (e.g., gallbladder removal) The guidelines do not recommend desmopressin for major procedures because patients need to be fluid-restricted for approximately 24 hours after administration because of the risk of hyponatremia. Desmopressin is a synthetic analog of vasopressin, which results in the accumulation of free water similarly to vasopressin. The guidelines do recommend giving VWF-containing concentrate to increase VWF and factor VIII to greater than 50% from baseline for at least 3 days. VWF concentrates can be given every 12 hours or as continuous intravenous infusions. Tranexamic acid should be given as an adjuvant both prior to the procedure and in the days following. Cryoprecipitate is not recommended because it can’t be virally inactivated.  Preprocedure prophylaxis in type 2 or 3 VWD Desmopressin does not work for most patients with type 2 or 3 VWD. So even for minor procedures, these patients will need to receive VWF concentrate coupled with antifibrinolytics. Show notes written by Sheila DeYoung, DO, a resident at Pennsylvania Hospital, Philadelphia. Disclosures Dr. Henry has no relevant disclosures. Dr. James disclosed relationships with Baxter/Baxalta/Shire, CSL Behring, Bayer, and Octapharma. *  *  * For more MDedge Podcasts, go to mdedge.com/podcasts Email the show: podcasts@mdedge.com Interact with us on Twitter: @MDedgehemonc David Henry on Twitter: @davidhenrymd

  Bleeding Disorders, also known as Hemophilia, von Willebrand Disease, Coagulation Disorders, Blood Clotting Disorders, Clotting Factor Deficiencies ​Bleeding disorders are rare disorders affecting the way the body controls blood clotting. If your blood does not clot normally, you may experience problems with bleeding too much after an injury or surgery. This health topic will focus on bleeding disorders that are caused by problems with clotting factors, including hemophilia and von Willebrand disease. Clotting factors, also called coagulation factors, are proteins in the blood that work with small cells, called platelets, to form blood clots. Any problem that affects the function or number of clotting factors or platelets can lead to a bleeding disorder. A bleeding disorder can be inherited, meaning that you are born with the disorder, or it can be acquired, meaning it develops during your life. Signs and symptoms can include easy bruising, heavy menstrual periods, and nosebleeds that happen often. Your doctor will review your symptoms, risk factors, medical history, and blood test results to diagnose a bleeding disorder. Your doctor may recommend medicines or clotting factor replacement therapy to treat the bleeding disorder. Some bleeding disorders are lifelong conditions, and some can lead to complications. Even if you do not need medicine to treat the bleeding disorder, your doctor may recommend taking precautions before a medical procedure or during a pregnancy to prevent bleeding problems in the future. (credits to NIH)   TRANSCRIPT Lita T  00:07  Hello and welcome to another episode of PodcastDX. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita. Ron  00:18  I'm Ron Jean  00:19  and I'm moving to Hawaii. Lita T  00:21 No, she's not Jean  00:22   it snowed again last night. Lita T  00:23  I know but Ron  00:24  and today Jean  00:25  and today Lita T  00:26  still not moving to Hawaii. Jean  00:27  ohhh moving to Hawaii Lita T  00:28  Remember when you said you cannot shovel lava? Jean  00:30  Lava  Lita T  00:31  Okay, Jean  00:31  this is true. Lita T  00:32  We're staying here. Jean  00:33  Okay. Lita T  00:33  Collectively we're the host of podcast dx. March is bleeding disorders Awareness Month, although bleeding disorders may be acquired. On today's show, we're going to be talking about the most common inherited bleeding disorder, von Willebrand disease, Jean  00:53  someone with (unitelligable) the blah...blah Lita T  00:55  What? Jean  00:56   Someone living with a bleeding disorder has blood, which does not clot properly. Ron  01:02  When someone is injured and bleeding, a blood clot forms to hopefully...to hopefully stop that person from losing too much blood. This process requires both blood platelets and clotting factors which clump together to form something like a dam to stop the bleeding. Lita T  01:20  Right?  I remember watching Grey's Anatomy. Ron  01:22  (Chuckle) Lita T  01:23  Okay, we need more platelets, right? Jean  01:26  I don't watch Grey's Anatomy...but sure I could see them saying that. Lita T  01:28  Yeah, cuz you know, somebody is bleeding. They need more platelets! Jean  01:31  Right Ron  01:31  That's not scripted. Lita T  01:33  No, it's not. Jean  01:33  No. Lita T  01:35  Someone with a bleeding disorder may notice that they bruise easily bleed; excessively during medical or dental procedures or when cut; have unexplained nosebleeds and bleeding gums and internal bleeding. And when I was on blood thinners...no Jean  01:54  Here we go... Lita T  01:54  Right? Wait was I am blood thinners or aspirin? I was either on blood thinners or a baby aspirin at one time. And I was outside gardening. And I grabbed a thorn bush.  Right? I was clipping and the thorn punctured something on my wrist. And I'm watching it and it's going: squirt, squirt, squirt, and I'm just watching it. I like Isn't that interesting? As it squirting like a squirt gun every you know it would like with my pulse. Squirt, squirt, squirt. And then finally I said: "Okay, better stop this." So, I put pressure on it to stop it. But um, yeah. Jean  02:24  We're all surprised she's still here. (Chuckle) Lita T  02:36  (Boisturious laughter) Ron  02:36  But you definitely painted a picture. Lita T  02:38  Yeah. Right. So that's what it would be like, if you have a bleeding disorder. Jean  02:41  I don't know if that's exactly what it would be like, that sounds like an arterial spray that squirting in very, very dangerous. Lita T  02:47  Okay, that's a bleeding disorder. Jean  02:49  Bleeding problem. Ron  02:50  So Lita T  02:51  yeah. Ron  02:52  In addition to obtaining a complete medical history, your healthcare provider may order a complete blood count, a bleeding time test and or a platelet aggregation test to help diagnose your condition. Jean  03:07  And have you guys ever had a bleeding time test? Ron  03:10  Me personally? No. Jean  03:11  Oh, they like cut your, nick, your ear and then stand there and wait to see when it stops bleeding. Lita T  03:18  (chuckling) Jean  03:19  That's what I remember. Lita T  03:19  like watching. paint dry? Ron  03:20  I don't like your doctor's. Jean  03:21  Yeah, well, that wasn't my doctor. That was my mom. Oh, no, just kidding. Okay. Um, treatment for bleeding disorders will likely depend on the severity and cause of the specific bleeding disorder an individual has. Lita T  03:33  Right. And although I had never heard of it before, today, the most commonly inherited bleeding disorder is von Willebrand disease. Ron  03:45  Well I can say that approximately 1% of the population here in the US are affected by von Villa brain disease. And it's characterized by an insufficient amount of a protein. Ironically, the von Willebrand factor or VFW Jean  04:03  VWF Lita T  04:04  The VFW hopefully doesn't. It's causing you to bleed you're going to the wrong  VWF Ron  04:11  Did I say I do glasses. I'm sorry, the von Willebrand factor or v w F, which aids in the clotting, Lita T  04:18  right? There are three forms of von Willebrand disease. Jean  04:24  We're gonna say it differently every time you say Lita T  04:26  Yes, okay. Individuals with type one have less VWF than average and may have associated bleeding issues. Jean  04:37  Were and those living with type two von Willebrand disease have enough v wF in their system, but their Vidya wF does not function correctly or is incorrectly formed. And Ron  04:49  type three, v w.f Jean  04:52  Vwd  willen brand disease Oh, tight as opposed to von Willebrand factor. Oh, Okay, Lita T  05:00  okay. So type three v WD. Ron  05:03  Okay? So type three v WD is very serious individuals with this form of von Willebrand disease, do not make v w f at all. Oh, yeah, right. And their platelets cannot clot and this is very This is a very serious condition which makes bleeding difficult to control. Lita T  05:23  That sounds terrible. Individuals with von Willebrand disease should typically avoid taking medications which may increase their risk of bleeding such as aspirin, or non steroidal anti inflammatories. Jean  05:37  And if you have a bleeding disorder, it is vital that you inform your health care providers, including your doctors and dentists. And I would suggest if you know if it's a very serious form, that you have an ID bracelet that states that Lita T  05:50  Oh, yeah, for sure. And carry a lot of gauze. Jean  05:54  I don't get a tourniquet. I don't think you should be able to carry a tourniquet, no band aids. I think people that carry Okay, tourniquets are very serious, Lita T  06:02  right. Okay. If you would like to know more about bleeding disorder awareness, check out the link to the national hemophilia foundation Foundation's website which will be on our web page, or you may want to donate to a red tie fundraiser. Jean  06:21  And I think Haemophilia is what we've all associated with writing disorders. That's what I've heard, right? But it's very, very rare. It just gets a lot of publicity, because you hear about, you know, like Royals hat being haemophiliac and or being haemophiliacs because, Lita T  06:34  you know, that's, that's where it came from. Jean  06:37  No, it's just inbreeding, and the those, you know, because then you're passing the factor on and you're increasing the chance, or likelihood that two people with the same factor will pass it on. But Ron  06:47  that's the most common, right. No, Jean  06:49  no, no, it's not. It's very rare. von Willebrand disease is the most common. Isn't that weird? And we've never heard of that. Yeah, right. That's Yeah, it's very counterintuitive. It is very counterintuitive. But that's what the internet says, and we believe everything on the internet. Lita T  07:07  And gene would like you to know about a blood parfait recipe in case you wanted to share this with your friends. Jean  07:17  Well, the National hemophilia foundation does try to utilize different techniques to help people understand more about their blood and clotting. And to help illustrate that, they suggest that you could try to make a blood purvey, you could use a cream colored substance like vanilla ice cream, or maybe a yogurt as your base use Cheerios. And that will represent your platelets, although they're nice and round, which I don't understand. And you kind of want something like awkwardly shaped but red m&ms or red Hots, and those could be the red blood cells, white chocolate chips, or mini marshmallows. And these can be the white blood cells, pretzels. And these can be the fibrin which is the kind of the stuff that joins with platelets to form that your clot, okay. Gummy worms in the eye can actually represent the V WD. And to top it off, put on some rainbow sprinkles, and that'll represent the 13 other blood factors. Lita T  08:14  Yeah, we'll be doing that. Ron  08:18  I gotta tell you, I learned quite a bit on this. This morning.  Lita  08:21  Oh well, that's Jean  08:22  that's good. Lita T  08:23  Yeah, I'm glad somebody did. Yeah, I Jean  08:24  learned we're not moving to Hawaii. Lita T  08:26  No, we're not moving to Hawaii. Ron  08:28  Well, for our listeners, if you have any questions or comments related to today's show, you can drop us a line at podcast dx@yahoo.com through our website, podcast, dx comm on Facebook pitter pitter pitter patter pitter patter on Jean  08:47  his own app. Wow. Have you heard from somebody on Twitter? I hear they have a lot of patter. Ron  08:54  Let's try this again. Okay, through our website, podcast, dx.com on Facebook, Twitter, Pinterest, or Instagram, Jean  09:02  I can appear as a combination of Twitter and Pinterest. I like it. Lita T  09:05  Yeah. Okay. And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime. Never disregard professional medical advice or delay of seeking it because of something you have heard on this podcast till next week.

Join a candid roundtable with Chapter leaders, Rich Pezzillo, Sue Martin, and Maureen Grace as they share what makes our community so unique and what keeps them up at night.  Let’s celebrate Bleeding Disorders Awareness Month by lifting up our leaders who work tirelessly for the benefit of our community.   Program Notes: Find your local chapter here: https://www.hemophilia.org/community-resources/resources-near-you/nhf-chapters  Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/

von Willebrand’s disease is the most common bleeding disorder, but did you know it still remains mostly a mystery? Listen in with Patrick as he provides a great overview on vWD, the tricky diagnosis process, the science behind it, and treatment options for those affected. Bleeding Disorders Awareness Month celebrates our fellow vWD bleeders too! Check it out to learn more!   Program Notes: All About VWD from NHF: https://www.hemophilia.org/bleeding-disorders-a-z/types/von-willebrand-disease  CDC on vWD: https://www.cdc.gov/ncbddd/vwd/  Newly released vWD Guidelines: https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/von-willebrand-disease    Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/ 

Do you want to know the basics of hemophilia, or do you have a friend or family member that could use an overview? Bloodstream has you covered! Join us for this special episode, in celebration of Bleeding Disorders Awareness Month, as Patrick gives us the basics on Hemophilia A and B, treatment history, and HTC’s.    Program Notes: Brush up on your Hemophilia Skills with NHF: https://www.hemophilia.org/bleeding-disorders-a-z  CDC on Hemophilia: https://www.cdc.gov/ncbddd/hemophilia/   Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/ 

To celebrate Bleeding Disorders Awareness Month, BloodStream is releasing daily episodes full of stories, history, and the people that make our community special. Start here with our first special episode as Patrick gives us the history behind Bleeding Disorders Awareness Month and the advocacy work it took, over decades, to become a reality.    Program Notes: Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/ 

We Show Our Stripes for Rare Disease Day by welcoming NHF Education Specialist, Teen Impact Awards Host, and all-around wonderful advocate, Nikole Scappe to discuss her new book for rare bleeding disorders, Super Seven! Also, Amy shares a press release from NHF, WFH, and EHC on the recent Fitusiran clinical trial updates. A can’t miss episode of BloodStream!   Program Notes:  Register for the Super Seven Launch Party: https://www.hemophilia.org/events/nhf-book-launch-party  Fitusiran Press Release: https://www.hemophilia.org/news/sanofi-revises-fitusiran-dosing-regimen-to-mitigate-risk-of-vascular-thrombosis  Show Your Stripes For Rare Disease Day with NORD: https://rarediseases.org/rare-disease-day/ 

Peter Baker presents a short podcast on the BSH Guideline on Laboratory aspects of assays used in haemostasis and thrombosis. Peter Baker discusses the following: 1) Preanalytical variables  2) Calibration and control of assays including generation reference ranges 3) Assays involved in the investigation of a bleeding and thrombotic tendency  4) TTP and Molecular testing  This guideline is intended to help clinical laboratories perform high quality valid assays for basic procoagulants and anticoagulants as part of a routine diagnostic service. Areas that overlap with or have been included in other BSH (https://b‐s‐h.org.uk/guidelines/) or United Kingdom Haemophilia Centre Doctors Organisation (UKHCDO)(http://www.ukhcdo.org/guidelines/) guidelines have been omitted, including guidance on: heparin‐induced thrombocytopaenia (HIT); lupus anticoagulant (LA) testing; D‐dimer assays; platelet function testing; diagnosis of von Willebrand disease (VWD); measurement of factor replacement in haemophilia A and B; monitoring of anticoagulants [vitamin K antagonists (VKA) and direct oral anticoagulants (DOAC)]; and global assays of haemostasis (e.g. TEG, ROTEM, thrombin generation). Peter Baker is a Clinical Scientist working at the department of Haematology at Oxford University Hospitals NHS Trust. 

Amy and producer, Greg, share what Bloodstream has in store for Bleeding Disorders Awareness Month and Corey MacGregor, from Tremeau Pharmaceuticals, stops by to share her personal journey with chronic pain and why The Pain Pod was an opportunity she was passionate about.  SUBSCRIBE and listen to The Pain Podcast 

Patrick and Amy discuss some of the topics presented during #EAHAD2021’s Virtual Conference before Amy’s joined by FLOW host Jessica Richmond for an interview with pediatric hematologist/oncologist Dr. Angela Weyand, aka the “Shematologist!”   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   CHECK OUT ALL OUR SHOWS: http://bit.ly/AllBloodStreamStuff   #EAHAD2021 on-demand: http://bit.ly/EAHAD2021   DR ANGELA WEYAND on Twitter: http://bit.ly/Shematologist  

Patrick and Amy are joined by Effie Parks from the Once Upon A Gene podcast and Mel Forrest from Season 2 of The Pain Podcast!  They also touch on recent bleeding disorders news and preview next week’s exciting expert guest!   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   CHECK OUT ALL OUR SHOWS: http://bit.ly/AllBloodStreamStuff   ONCE UPON A GENE PODCAST: http://bit.ly/EffiesShow PAIN PODCAST: http://bit.ly/PainPodS2

Patrick and Amy discuss a recently published article by clinicians urging colleagues to educate their patients via social media. Then, our hosts bring on Brian O’Mahony to discuss his gene therapy clinical trial experience, his take on recent community news, and how the Irish Haemophilia Society has fared through COVID19. Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   BRIAN on Twitter: http://bit.ly/BOMtwitter TWITTER changing hematology: http://bit.ly/TwitterASH21 MEN born w hemophilia on gene therapy: http://bit.ly/RobustInquiry GENE therapy trial placed on hold: http://bit.ly/GTtrialHold   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy discuss the long-awaited Von Willebrand Disease (vWD) guidelines published in the medical journal, Blood; provide an exciting update on a recent “Believe 19” guest, and speak to Camille Proctor, founder of The Color Of Autism Foundation.   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   vWD Clinical Guidelines: http://bit.ly/vWDguidelines FLOW podcast: http://bit.ly/FLOWBSM PHILLY Famous podcast: http://bit.ly/PhillyFamousPodcast COLOR of Autism Foundation: http://bit.ly/ColorOfAutism   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20   #hemophilia #vonwillebranddisease #vwd #autism #podcast

Patrick and Amy review NHF’s FAQs regarding the COVID-19 vaccine’s safety for people with bleeding disorders, discuss recent healthcare legislative victories, and welcome Christie VanHorne and Jessica Richmond, hosts of BloodStream Media’s newest show full of straight talk about extreme bleeding: FLOW.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite FLOW podcast: http://bit.ly/FLOWBSM CHRISTINE VanHorne on LinkedIn: http://bit.ly/CVHonLI JESSICA Richmond on LinkedIn: http://bit.ly/JLRonLI NEHA Fund for Max: http://bit.ly/nehamemorial  WASHINGTON Days registration: http://bit.ly/DCDays2021 COVID-19 Vaccine FAQs from NHF: http://bit.ly/COVIDvaccineNHF SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy are joined by acclaimed pediatric hematologist and researcher Dr. Robert Sidonio for his take on the state of bleeding disorders as we close out this most unusual year.  Happy Holidays!   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   FLOW, a BloodStream show for women - http://bit.ly/BSMFlow DHAMMA (Vipassana) - http://bit.ly/DhammaBSM   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy are joined by National Hemophilia Foundation’s (NHF) VP of Public Policy Nathan Schaefer and Senior Manager of Government Relations Bill Robie to discuss key differences between state and federal advocacy, unique challenges to state-level advocacy, and how NHF’s State Based Advocacy Coalitions (SBAC) program assists chapters with state advocacy.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   NHF’s State Based Advocacy Coalitions (SBAC) Program: bit.ly/NHFSBAC   HERTZ on Cheat Codes: bit.ly/cheatcodespod PRESTON on Journeys: bit.ly/BloodStreamJourneys GENE THERAPY article: bit.ly/GTfactor   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20    

Our theme this month is “The Life I Choose.”  So often, with a chronic condition, it can feel like nothing is within our control.  That can be challenging physically, mentally, emotionally. Our stories this month dive into those challenges, as well as the empowerment that comes by taking charge of the things we can control.  By reminding ourselves of the ways we can live the life we choose.   Program Notes: Want to follow more of our Journeys? Subscribe here!    BloodStream Journeys is exclusively sponsored by BioMarin: www.biomarin.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited’s Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

Patrick and Amy are joined by hemophilia and sickle cell expert Dr. Michael Callaghan who provides major takeaways from #ASH20. They also discuss actor Amanda Fuller’s disclosing her son’s hemophilia and the Irish Haemophilia Society’s CEO Brian O Mahony disclosing his enrollment in a gene therapy clinical trial.    PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   AMANDA FULLER’s IG post: bit.ly/AFullerHemB PEOPLE Magazine story: bit.ly/AFullerPeople   DIVERSITY & Inclusivity in research: bit.ly/BMSDICT   BRIAN O MAHONY’s gene therapy experience: bit.ly/BrianGThemB IRISH TIMES story: bit.ly/ITFunCure   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy discuss the importance of Giving Tuesday, the significance of #ASH20 (American Society of Hematology’s Annual Meeting), and they speak with a young man named Zachary who recently made an incredible commitment to Save One Life.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUPPORT Save One Life: https://bit.ly/S1L2020 S1L SCHOLARSHIP Program - Philippines: https://bit.ly/S1LScholarshipPh WORLD AIDS Day w/ Jeanne White-Ginder: https://bit.ly/JeanneWAD2020   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

In this episode we take a deep dive into a rare bleeding disorder- Von Willebrand Disease! We discuss the importance of VW factor, the different types of VWD, common symptoms, pertinent investigations and an approach to management. Check out our associated infographic at www.theinternatwork.com.  

The BloodStream team shares gratitude, stories, and bizarre moments from Thanksgivings past, then Philadelphia Youth Basketball CEO Kenny Holdsman joins for a Believe 19 interview!   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SEGMENT SPONSOR: Genentech - bit.ly/BloodlessBattle TWITCH Rivals: bit.ly/2ZXZRTx   PHILADELPHIA Youth Basketball: bit.ly/PYBBSP20   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

On July 31st, something happened in the hemophilia community that had never happened before.  A group of teens came together to perform a musical about hemophilia on - where does everything in our life happen these days? You guessed it. ZOOM!  This month’s episode features the first-hand experiences of three of those inspiring young people.   Program Notes: Want to follow more of our Journeys? Subscribe here!    BloodStream Journeys is exclusively sponsored by BioMarin: www.biomarin.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited’s Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

Amy introduces The Believe 19,  a new segment with an interview with Rue Mapp, founder and CEO of Outdoor Afro. Outdoor Afro is a national organization celebrating and inspiring Black connections and leadership in nature. We’ll hear what their work is all about!  Also, Patrick and Natalie share their excitement to participate in Save One Life’s annual fundraiser, Wheels for The World. Listen in to celebrate giving back and learn more about different ways to contribute to the good work being done in our communities!    Presenting Sponsor: Takeda Learn More about Outdoor Afro: Outdoor Afro Website Sign up for Wheels for the World: Save One Life  Listen to the It’s in the Gene’s Podcast!: Gene Therapy Podcast   SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!

We breakdown and react to a recent article on the role of child-abuse pediatricians and some of the dreadful outcomes that’ve come from the creation of this well-intended specialty.  Then NHF board member and blood brother John Faria joins Patrick to discuss his role in the recently launched HemeWork program.   Presenting Sponsor: Takeda Segment Sponsor: Genentech Article: When the Misdiagnosis Is Child Abuse The Marshall Project  HemeWork: Community Stories   SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!

 Patrick, Natalie, and Amy circle up to share highlights and personal takeaways from the National Hemophilia Foundation’s Virtual Bleeding Disorders Conference, which took place August 1st-8th via hemophilia.org. Listen in as the hosts recap some critical sessions, relive their favorite experiences, and share personal takeaways from #NHF2020! Presenting Sponsor: Takeda SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!  

Our guest for this month is Believe Limited CEO and Bloodstream host, Patrick James Lynch. Ask the Expert is headed in a new direction and Patrick joins us to share what the future will hold for the Bloodstream Media network. Even though this will be the final episode of Ask the Expert, we are excited to announce the new path for our expert interviews, because they’re not going away! Listen in with Patrick and Amy as they share the new and exciting things coming from Bloodstream Media! Welcome to Episode 40, or To the Future! The final episode of the Ask The Expert Podcast!    Check out all the podcast offerings from Bloodstream Media: https://www.bloodstreammedia.com/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058  

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO the National Hemophilia Foundation, Dr. Len Valentino! We’ll learn how Dr. Valentino got his start, what lessons he learned from treating patients, his interests in the global disparity of care, and his thoughts of the Michael Jordan documentary, The Last Dance! Join us to get to know Dr. Valentino a little better! Welcome to Episode 39 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058    

The National Hemophilia Foundation announced new leadership in Dr. Len Valentino weeks before the COVID-19 outbreak and his unique position to guide our community during this unprecedented time has been welcome. Dr. Valentino joins us on Ask the Expert this month to share a bit of his story and his thoughts on the pandemic could affect the bleeding disorder community. Dr. Valentino shares how NHF is addressing the current COVID pandemic, NHF’s national research agenda, and how COVID could impact the shift in treatment in hemophilia. We’ll also chat about the Bleeding Disorder Conference going virtual this year, so join us for a can’t miss episode of Ask the Expert! Welcome to Episode 39 - or our Dr. Valentino Episode - of the Ask The Expert Podcast!  Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058  

This month we hear from 3 young men who have accomplished incredible things Against All Odds.  Their Journeys from child to young adult have shattered the expectations of what many might think possible, and remind all of us that we’re capable of much more than we may sometimes believe.     Want to follow more of our Journeys? Subscribe here!    BloodStream Journeys is exclusively sponsored by BioMarin: www.biomarin.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter    Check out Believe Limited’s Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO of Hemophilia Federation of America (HFA), Sharon Meyers, as she begins her tenure at the organization. Sharon shares how she became involved in non-profit work, her passion and philosophy on fundraising, and how she became involved within the bleeding disorder community! Join us to hear more about Sharon’s personal journey and what makes her tick! A fun episode of Ask the Expert! Welcome to Episode 38 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

During this period of unprecedented turmoil and uncertainty, the bleeding disorder community has found comfort in the Hemophilia Federation of America’s (HFA) messaging and voice. Newly-minted CEO of HFA, Sharon Meyers, joins us to share the behind the scenes work HFA has done to prepare statements, resources, and education during the COVID pandemic. She shares how HFA has set up a COVID-19 Relief Fund, as well as utilizing their foundational Helping Hands financial assistance program to provide support to community members during the crisis. Sharon stops by to share her vision for HFA going forward and how increased communication with NHF sets both organizations up for success. Join us for another great episode of Ask the Expert! Welcome to Episode 38 - or our Meet Sharon Meyers Episode - of the Ask The Expert Podcast!  Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

Join us for our “Get to Know the Expert” episode featuring Brian Ragaishis! Brian is a teenager with vWD who created the website Live Smart, Play Smart, a community where other teens affected by bleeding disorders can share their story. In today’s episode, we hear about what it was like for Brian when he was diagnosed with vWD and how he felt isolated from his friends. How did he manage and why did he think it was important for other teens to share their story? Check out this great episode and if you know an amazing teen affected by a bleeding disorder doing incredible things for their community, nominate them for the Teen Impact Award at www.teenimpactawards.com  Welcome to Episode 37 Part 2- or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the following resources mentioned in our episode: Nominate a teen for the Teen Impact Awards: https://www.teenimpactawards.com/ Apply for the Adam Lynch Scholarship here: https://www.teenimpactawards.com/scholarship To learn more about Live Smart, Play Smart and share your story: https://www.livesmartplaysmart.com/ To learn more about Bleeding Disorders Awareness Month and how you can contribute: https://redtiecampaign.org/  

SPECIAL EPISODE: BloodStream's interview with actor/producer Katy Wright-Mead, whose short film sometimes, i think about dying premiered at Sundance in 2019 and has been shortlisted for the 2020 Academy Awards!  Listen then watch #SITAD at: https://bit.ly/36wEmKG

von Willebrand disease is the most common bleeding disorder affecting 1% of our population and yet, it is the most unknown. Research for von Willebrand disease (vWD) continues to be elusive for patients and physicians alike causing frustration and emotional toil for those affected. On this episode of Ask the Expert, we welcome vWD hematologist and researcher, Dr. Christopher Ng M.D., from the University of Colorado Hemophilia and Thrombosis Center to share the latest from the medical community on diagnosis procedures, treatment, and the emotional struggle patients and their families experience as they search for concrete answers to their symptoms. Dr. Ng answers questions from our listeners with a thoughtful and compassionate approach to a complex disorder. Join us for a special episode of Ask the Expert developed for our vWD community! Welcome to Episode 34 - or our vWD Research Update Episode - of the Ask The Expert Podcast!  There are several national conferences for von Willebrand patients and their caregivers, as well as online resources. Check out the following resources for more information: Foundation for Women & Girl with Blood Disorders http://www.fwgbd.org/ NOW (National Outreach for von Willebrand) Conference - National conference for von Willebrand’s disease hosted by the Arizona Hemophilia Association: https://www.arizonahemophilia.org/now/ Victory for Women: https://victoryforwomen.org/ vWD Connect Foundation, hosts a national conference for vWD Type 3 every year: https://vwdconnect.org/ National Hemophilia Foundation hosts a vWD track at the National Conference: https://www.hemophilia.org/   “An accurate vWD diagnosis could take multiple times because it can be affected by patient stress, heavy exercise or inflammation.” Dr. Christopher Ng, M.D.   “vWD researchers are looking beyond just levels - they are looking at other genetic makeup that could affect bleeding.” Dr. Christopher Ng, M.D.   “vWD and platelets work together as a team to start the clotting process - you need both and they are hard to tell apart. .” Dr. Christopher Ng, M.D.   

Black & Tan Dynamos: The Wash & Wear Manchester Fun loving, smart, active, long-lived, wash and wear… The Manchester Terrier is an all-around favorite as a companion. The https://americanmanchesterterrierclub.wildapricot.org/ (Manchester Terrier) has two varieties, Standard and Toy, both descended from the extinct black and tan terrier, according to a panel of experts at the American Manchester Terrier Club National Specialty. The Manchester’s job was to hunt rats and other vermin in England and they retain the high prey drive today. Our experts encourage new owners to be sure their Manchester is on lead when outside a fenced area. “You can have a good recall, but a squirrel will always take precedence,” said Marla Zoz. Key Manchester Points: High drive, are food motivated but easily distracted. Very smart, pick up new skills quickly. Get very attached to their people. Suitable for a house or apartment. Need lots of physical activity. Require a lot of attention. Love being a part of the family. Need to spend time to develop well balanced companion. Low maintenance grooming… nails, clean teeth, wash and wear. Longevity – 15+ years. Health issues include cardiomyopathy and vWD, a bleeding disorder. When visiting with a potential breeder, be sure to ask if he/she is testing for these conditions with available DNA tests. Standard Manchester Terriers are allowed to have naturally erect ears, button (shown here) or cropped. Toy Manchesters are only shown with naturally erect ears. “You want to go, they’re ready at a moment’s notice. You want to cuddle on the couch, they’re right there,” said Jim Burrows. Toy Manchester Terriers are under 12 pounds, Standard are 12-22 pounds. These dogs are terriers, whether standard or toy sized, our panelists noted. They can “talk a lot.” Everyone agreed that the “four-footed burglar alarm” breed can be vocal. “They’re going to bark if they see something they don’t know,” Burrows said. While generally aloof with strangers, the Manchester will warm up to new folks quickly. The breed needs a lot of socializing to develop a well-rounded dog, the breeders all agreed. Dog aggression, typical of many terriers, is manageable with appropriate socializing and training. Pure Dog Talk is sponsored by: Support this podcast

In this episode, qualified Naturopath Ashleigh Mythen talks with Jenna Lovell - a freelance writer and editor. Who at the age of just 16 was diagnosed with a rare inherited bleeding disorder called Von Willebrand Disease or VWD for short. She is an advocate of women and girls in her illness community and has done a lot of exploring and experimenting with lifestyle factors such as diet, excercise and Chinese Medicine to support and manage her symptoms. Jenna has been blogging about her bleeding disorder, health and life for over 5 years at mymissingfactor.com Some of the things you'll discover in this week's episode are: + Jenna Lovell's inspiration to begin sharing and blogging her experiences + Jenna's personal insight and journey from chronically ill to chronically thriving + What is Von Willebrand Disease (VWD) and what it's like to live on a day to day basis with a chronic disorder + How Jenna juggle's her business and her life around having a chronic disease + The impact and importance of excercise on your physical and mental health + How blending nutrition, lifestyle changes and Chinese Medicine changed her life + The importance of blending different therapies to find what works for you + Advice for people beginning the journey of chronically ill to be able to chronically thrive + Road blocks to health and how to bypass fear and that inner critic to get the results you want + Why having health goals helps create health outcomes + 3 things Jenna does every day to say healthy + AND SO MUCH MORE!!   RESOURCES + Chinese medicine doctor Dr Nat Kringoudis + Jenna's barre & reformer Pilates classes she attends in Hobart as well as in Melbourne + Bianca Potenta interview episode 004 is HERE   CONNECT WITH JENNA LOVELL + Website: mymissingfactor.com/ + Facebook: www.facebook.com/mymissingfactor/ + Instagram: www.instagram.com/mymissingfactor/   REVIEW Your written reviews and feedback inspire me to improve each episode. Plus they help spread the it can't be that friggin hard message far and wide. If you love the podcast and the information shared then please leave a review and rating over at iTunes or stitcher. I would also really love to hear about your own health journey, what your struggling with and what you'd love to hear covered in upcoming episodes please leave me a comment below or reach out to me at Ashleigh@itcantbethatfrigginhard.com   WEEKLY NEWSLETTER For weekly health tips, tricks and other goodies straight to your inbox, sign up to my weekly newsletter   [mc4wp_form id="9"]  

This month on The BloodStream Podcast, community member Lidia Ruiz shares her “An Unexpected Blessing” story, Natalie presents an article on the Step Therapy bill headed to Rhode Island’s state house, we highlight ASH, ISTH, NHF, and WFH’s collaboration in developing clinical practice guidelines for VWD and expectant mom, Rebecca Haber, shares with us how her pregnancy led to discovering that she has Hemophilia C (Factor XI deficiency) in this month’s Interview Segment. All that and more on Episode 26 of The BloodStream Podcast! Exclusive Sponsor: Shire Latest Ask The Expert Podcast: Ep. 16: Nutrition - w/ Tracy Mann - June 25, 2018 Latest Powering Through Podcast: Ep. 18 - Florida w/ Lilliam Bervis, Bobby Monohan, & Allie Cashel TeenImpactAwards.com BreakingThroughHemophilia.com STBhemo.com (Stop The Bleeding!) Leave us a review on iTunes!  Help others from BloodStream! Community News In 60 Seconds: Does CRISPR cause cancer? Developing Inhibitors Inflates Treatment Costs and Impairs Quality of Life, Study Finds New Canadian study to improve eradication of inhibitors in Hemophilia A patients) uniQure Enrolls First Patient in Phase III HOPE-B Pivotal Study of AMT-061 in Patients with Hemophilia B) NHS England greenlights hemophilia drug CHMP recommends EU marketing authorization for Veyvondi® [vonicog alfa, recombinant von Willebrand factor] for adults with von willebrand disease] Hemophilia Drug Development Summit Takes Aim at Hurdles Facing New and Upcoming Treatments Oxidation of FVIII Increases Immune Response in Hemophilia A Mouse Model, Study Finds) Like Segment: 'Step Therapy' Bill Headed to RI State House // Stand Against Step Therapy: http://www.steptherapy.com/ Share Segment: Lidia Ruiz - An Unexpected Blessing Comment Segment: NHF, WFH, ISTH, and ASH to collaborate on clinical practice guidelines for von willebrand disease. Help Inform Guidelines for VWD Diagnosis and Care BetterYouKnow.org Interview Segment: Rebecca Haber BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

The BloodLine Podcast presents: von Willebrand Disease (vWD), Part 3 - The Community & The Future Patient communities have started organizing and increasing educational opportunities for people living with vWD, thanks in large part to rising awareness of the disorder around the country and the world. This episode features some profound, challenging and inspiring stories of how the vWD community is connecting, growing and changing. You'll meet patients and clinicians and hear their stories, and their perspectives on the future of vWD treatment, management, and community-building. Stream or download the episode today by visiting www.BloodLinePod.com! BloodLine is a BloodStream Media podcast series featuring deep dives into the stories that matter most. This three-episode series focuses on von Willebrand Disease, and features stories of people affected by vWD alongside interviews with clinical experts.  The series is sponsored exclusively by Shire and is intended to reduce the marginalization of people w/ vWD, increase clinical and organizational focus on vWD, and to give a voice to the diverse experiences of patients and families affected by vWD.  For more information on living with von Willebrand Disease please visit BeyondTheBleed.com

The BloodLine Podcast presents: von Willebrand Disease (vWD), Part 2 - Life with vWD vWD affects patients and their families in numerous ways. This episode, the second of three in our long-form podcast series on vWD, features powerful patient stories on the various experiences of living with the vWD, including combating stigma and the reductive outlooks on vWD. The stories run the gamut from heart breaking to uplifting and inspiring, and they'll certainly be familiar to anyone who lives with vWD or loves someone with vWD.  Stream or download the episode today by visiting www.BloodLinePod.com! BloodLine is a BloodStream Media podcast series featuring deep dives into the stories that matter most. This three-episode series focuses on von Willebrand Disease, and features stories of people affected by vWD alongside interviews with clinical experts.  The series is sponsored exclusively by Shire and is intended to reduce the marginalization of people w/ vWD, increase clinical and organizational focus on vWD, and to give a voice to the diverse experiences of patients and families affected by vWD. For more information on living with von Willebrand Disease please visit BeyondTheBleed.com 

The BloodLine Podcast presents: von Willebrand Disease (vWD), Part 1 - Diagnosis & Management What is von Willebrand Disease (vWD), how is it managed, and what is the common perception of this condition? In this podcast episode, the first of three in a new long-form audio experience on vWD, you'll hear patients and clinicians from around the world share personal stories of diagnoses, learning about vWD, and learning to manage the condition.  Stream or download the episode today by visiting www.BloodLinePod.com! BloodLine is a BloodStream Media podcast series featuring deep dives into the stories that matter most. This three-episode series focuses on von Willebrand Disease, and features stories of people affected by vWD alongside interviews with clinical experts.  The series is sponsored exclusively by Shire and is intended to reduce the marginalization of people w/ vWD, increase clinical and organizational focus on vWD, and to give a voice to the diverse experiences of patients and families affected by vWD.  For more information on living with von Willebrand Disease please visit www.BeyondTheBleed.com 

Description: In this episode- it's Bleeding Disorders Awareness Month! Patrick and Natalie discuss that, Washington Days, the landmark opening of the My Life, Our Future research repository, and more! Also, Australian community member Jenna Lovell gives her take on life w/ vWD, and Mainer Justin Levesque discusses photography, hemophilia, Iceland, and much more during a wide-ranging Sit-Down conversation with Patrick. All this and more on Episode 10 of The BloodStream Podcast!   Sponsors for Episode 10: Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website Supporting Sponsor: Shire Link to BleedingDisorders.com   Trending Topics: EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A (Link) FDA Gives Breakthrough Designation to Hemophilia Gene Therapy (Link) Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients (Link) LA Kelley Launches a New Edition of Raising a Child With Hemophilia (Link) Learn more about all of LA Kelley’s offerings (Link) Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link) HFA 2017 Policy & Government Relations Internship (Link) New and Improved Blood Brotherhood Forum from HFA (Link) Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link) Like Share Comment: Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link to Article. Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link to Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016). Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link to Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign    Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay