bloodstream

Patrick and Amy are live, in-studio, for the first BloodStream LIVE of the year!  Join the hosts and a variety of special guests for segments on patient education, the return of in-person patient meetings, asking for help, and so much more- including an announcement about a major rare disease podcast joining BloodStream Media!

Notes:

Presenting Sponsor: TAKEDA - bit.ly/TakedaBDsite

Let’s Talk Segment Sponsor: SANOFI GENZYME - http://bit.ly/LetsTalkMHBSP

CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff

SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP

SUBSCRIBE to Once Upon A Gene Podcast: bit.ly/OUAGspot

SUBMIT to the BIG BLOODY TALENT SHOW: bit.ly/BigBloodyTalentShow

SIGNUP for our FIRST-EVER NEWSLETTER: bit.ly/NewslettterSignups

In this episode Dr. Z and Dr. C sit down with sickle cell difference makers at the Indiana Hemophilia Treatment Center. 

Dr. Ahmar Zaidi on Twitter

Dr. Michael Callaghan on Twitter

BloodStream Media

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Subscribe to and rate Cheat Codes

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Subscribe to and rate BloodStream Journeys

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Patrick and Amy catch up on some recent community news then speak with leukemia survivor and bone marrow transplant recipient Bob Falkenberg as he’s set to kick off his 10th Lifeblood cycling ride to support Be The Match.

Notes:

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP

CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff

BloodStream LIVE May 26th - Event link: http://bit.ly/BloodStreamIsBack

Bob’s Team Lifeblood: http://bihttps://bit.ly/3yaPj2U

NHF’s Community Voices in Research: http://bit.ly/CVRNHF

CSL and uniQure close agreement: http://bit.ly/CSLuni

Experimental SubQ Inhibitor Treatment: http://bit.ly/SubQinhib

In episode 05 “What is the patient experience?” our Flow team takes a look at patient stories from three different menstruators:

How does a doctor miss a woman’s second vagina? 

What is a near-death first period experience like?

What does it look like to face racism when seeking treatment?

Christie and Jessica speak with Brittany Jacobs, Michelle Ryzak, and Teonna Woolford about their varied experiences of extreme menstruation.

Program Notes:

In episode 05, Christie and Jessica focus on the patient experience. They speak with Britany Jacobs about uterus didelphys; share some of their conversation about extreme first menstruation with von Willebrand's disease patient MIchelle Ryzak; and talk to Teonna Woolford - patient advocate on a mission to shine light on sickle cell’s impact on reproductive health.

LINKS:

@britsburg on Tik Tok: https://www.tiktok.com/@britsburg?lang=en

What is Uterine Didelphys? https://www.nationwidechildrens.org/conditions/uterine-didelphys

Michelle Ryzak: https://www.howtotalktoyourdoctor.com/blog1/patient-spotlight-meet-michelle

Teonna Woolford: https://www.howtotalktoyourdoctor.com/blog1/patient-spotlight-meet-teonna

Teonna’s organization “SC RED”: https://sicklecellrhed.org/

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/26KF

Patrick and Amy speak to Kathy Raufi on the brink on International Thalassemia Day, get input from the Coalition for Hemophilia B on some recent news, and discuss how von willebrand factor may be key to helping treat clotting disorders, too!

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP

CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff

International Thalassemia Day #ITD2021

To learn more about iron overload, treatments, comorbidities with Thalassemia, and more, visit:

Thalassemia Foundation of Canada:

https://bit.ly/33zlLOB

Cooley’s Anemia Foundation:

https://bit.ly/2RudLeX

Patients’ Stories:

https://bit.ly/2SvzLqe

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

Patrick and Amy are joined by FLOW Podcast host Jessica Lauren Richmond to discuss assessing women’s health holistically and by Ruby Ball Foundation founder Ijeoma Azubuko to hear the harrowing story that led to her foundation’s innovative work. We also debut our new Let’s Talk mental health segment, featuring key moments from and expert insights into the Believe Limited documentary by the same name profiling mental health challenges in the bleeding disorders community.

Notes:

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme - http://bit.ly/LetsTalkMHBSP

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff

FLOW Podcast: http://bit.ly/FLOWpod

Ruby Ball Foundation: http://bit.ly/RubyBallIG

Silent Podcast: http://bit.ly/SilentPodcastRBF

Dr. Z sits down with Dr. Wanda Shurney and Gary Gibson.

Dr. Ahmar Zaidi on Twitter

Dr. Michael Callaghan on Twitter

BloodStream Media

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Subscribe to and rate Cheat Codes

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Subscribe to and rate BloodStream Journeys

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

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

Lunula Nutrition’s Delisa O’Brien joins Amy and Patrick to discuss our relationship to exercise and curative therapies. Then, Laurence Woollard joins to discuss his recent articles, one on adolescent transitional healthcare, the other on COVID-19’s impacting patient education through social media.

Notes:

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

Check out how to customize your exercise routine with Takeda at http://bit.ly/LivingHealthyBD

Delisa O’Brien - Lunula Nutrition Consulting

http://bit.ly/DelisaOnNutrition

http://bit.ly/DelisaOnTwitter

Laurence Woollard - On The Pulse Consultancy 

http://bit.ly/LaurenceInPEN

http://bit.ly/LaurenceInRareRev

http://bit.ly/LaurenceOnTwitter

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff

Dr. Z and Dr. C spend some time with Chief of Pediatric Infectious Disease at University of Florida, and nationally-recognized COVID-19 expert Dr. Mobeen Rathore to dispel some COVID-19 and vaccine myths.

Sponsored by Agios Pharmaceuticals 

Dr. Ahmar Zaidi on Twitter

Dr. Michael Callaghan on Twitter

BloodStream Media

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Subscribe to and rate Cheat Codes

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Subscribe to and rate BloodStream Journeys

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Back from paternity leave, Patrick rejoins Amy as co-host. They debrief last week’s emotional episode before welcoming social worker and regular contributor Alexa Abreu on to discuss how each of us relates to food and the idea of dieting. Then community member Kevin Leurquin joins to share his journey overcoming serious mobility challenges.

Notes:

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

Sponsored by Takeda. Learn how healthy eating can help your joints and how to better manage your bleeding disorder with Takeda at, www.bleedingdisorders.com/living-well.

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff

FIND KEVIN on Instagram: http://bit.ly/KevinLIG

Join us for an interview with Dr. Glenn Pierce who gives a terrific overview on the purpose and value of MASAC, the Medical and Scientific Advisory Council. MASAC was created by the National Hemophilia Foundation in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community. This committee plays a vital role in treatment, advocacy, and research into our communities. Join us to learn more about how MASAC can affect your life with a bleeding disorder. 

Program Notes:

Learn more about MASAC here: https://www.hemophilia.org/who-we-are/our-team/masac

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/ 

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/

FLOW’s Christie & Jessica speak with Dana Francis, Social Worker at University of California San Francisco, who specializes in supporting adults with bleeding disorders, as well as their partners and other family members.

What can individuals do to support themselves through the grieving process? Collective trauma / collective PTSD, caregiver / carrier grief, and transitional grief are discussed in today’s special episode of Bloodstream. Mental health resources are available at letstalkmh.com/resources

Hear our hosts on FLOW - straight talk about extreme periods, wherever you get your podcasts. March is Bleeding Disorders Awareness Month and The Bloodstream Podcast is bringing you short daily episodes. Find out more about all of Bloodstream Media shows at www.bloodstreammedia.com

Program Notes:

Thank you, Dana!

Let’s Talk, the mental health documentary featuring Dana Francois:

https://www.believeltd.com/project-lets-talk-mental-health

https://letstalkmh.com/resources

Find today’s Hosts’ on Instagram:  @jessicalaurenrichmond @howtotalktoyourdoctor

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/ 

Mit ihrem Cover von Lovefool, schießen sie durch die Decke und mischen die Charts auf. Jetzt haben sie ihr eigenen Baby released: Bloodstream. Wie die Jungs von Twocolors das letzte Jahr erlebt haben und was Bloodstream ihnen bedeutet, das hörst du gleich hier. Viel Spaß :)

It’s the third Thursday of Bleeding Disorders Awareness Month, and that means Josh is back to take a moment for mental health. Today’s subject is imposter syndrome, and he is joined as usual by Debbie De La Riva, who gives some expert opinions on where imposter syndrome comes from, how it presents in the bleeding disorders community, and what we can do when we are feeling like an imposter. 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/

Following our conversation on Diversity, Equity and Inclusion earlier this year, Kimberly Ramseur dives deeper into the experiences of people of color living with a bleeding disorder in the United States. This episode is the beginning of more conversations to highlight racial disparities and inequities within the American healthcare system. Black and Brown folk, we see you; we hear you. 

Find Kimberly on linkedin! https://www.linkedin.com/in/kimberly-ramseur-jd-mph-07783994/ 

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/ 

Dr. Lakiea Bailey from the Sickle Cell Consortium and Warrior University joins an all star cast of Cheat Code veterans to discuss the best science from the December American Society of Hematology meeting.

Part 1 - Curative therapies

Dr. Ahmar Zaidi on Twitter

Dr. Michael Callaghan on Twitter

BloodStream Media

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Subscribe to and rate Cheat Codes

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Subscribe to and rate BloodStream Journeys

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter