Our guest today is Dolores Dumas. Dolores is a 73-year-old living with PK deficiency, and was diagnosed as a teen with nonspherocytic hemolytic anemia. During a visit with a new hematologist, she received a definitive diagnosis of PK deficiency. Dolores feels grateful that she finally has a name for her condition.

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community.  Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

TRANSPARENCY STATEMENT 

Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host Rachel Grace and guest Dolores Dumas have been compensated for her time.

Patrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders.

Show Notes:

Subscribe:

The BloodStream Podcast

Listen to The Final Summit Season 2 Podcast!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Jessica Lauren Richmond, co-host of the popular FLOW podcast, joins us to discuss all things menstrual health and Amy finally gets to ask –So, how’s your FLOW? We also have James Maple back with a music and self-expression segment that spotlights on community member, Max Feinstein.

Show Notes:

Subscribe:

The BloodStream Podcast

Listen and Subscribe to the FLOW podcast!

Share your FLOW story with us! How's Your Flow Calendly

Tik Tok @howsyourflow

Instagram @howsyourflow

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Join us as we celebrate World Sickle Cell day on June 19th with contributor Maya Bloomberg, the HemeNP and a conversation with hematologist Dr. Mike Callaghan. Great stuff about equity in healthcare, clinical trial participation, the Sing Me a Story organization, and the Denver Nuggets in the finals. Don’t miss it!

Show Notes:

Subscribe:

The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Sing Me A Story 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

We’ve got a new “SHEmophilia” audio segment brought to us by CHES, as well as Saverio Cimino featured in today’s music and expression segment. Then, Patricks catches up with community member, Michael Bishop. A great episode!

Show Notes:

Subscribe:

The BloodStream Podcast

Saverio Cimino’s Instagram

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at www.ches.education

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Dr. Guy Young joins us for an overview on the newest non-factor replacement therapy for hemophilia A and B, still in clinical trials–Fitusiran. Maya Bloomberg, the HemeNP, is back and so is James Maple with a segment featuring community member and musical artist, Shelby Smoak. We’ll also get a sneak peak of a brand new documentary featuring members of our community!

Show Notes:

Subscribe:

The BloodStream Podcast

Follow Maya Bloomberg @thehemenp

Check out https://shelbysmoak.com/ to listen to more of Shelby Smoak

Listen to PV Pod: Stories from the Marrow

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is brought to you by Genentech. To read about the efficacy and safety profile of this treatment, visit http://treathemophilia.com

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Gunnar Esiason, son of NFL legend Boomer Esiason, shares his story of living with cystic fibrosis and becoming the advocate he is today. We also speak with Rich Gorman: ethicist (!) on the ethics of gene therapy. Josh reflects on the connection between physical and mental health on Let’s Talk. A packed episode!

Show Notes:

Subscribe:

The BloodStream Podcast

Learn more about Gunnar Esiason and cystic fibrosis here!

Listen to PV Pod: Stories from the Marrow!

Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

A stacked episode with a new Maya Bloomberg (@TheHemeNP !) segment, music from community member Tamar Mitchell, and Patrick sits down with Dr. Z (Zolotnitsky !) to discuss his PT work it the hemophilia community. All that, and more, on this World Hemophilia Day episode of BloodStream Podcast!

Show Notes:

Subscribe:

The BloodStream Podcast

Celebrate World Hemophilia Day on social media!

Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!

Listen here to Tamar Mitchell’s new EP: 

Instagram

Apple Music

Spotify

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Patrick and Amy discuss the reaction to Patrick’s viral Warning to the Community and we can all agree that we struck a nerve! Also, our first segment with Maya Bloomberg, the @HemeNP where she discusses anemia. Plus, Blood Brother John Christen sharing his work, Bleeding China and the latest installment of Let’s Talk. 

Show Notes:

Subscribe:

The BloodStream Podcast

Check out Bleeding China on Substack by Blood Brother, John Christen

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Let’s Talk shares tips on how to care for your own or someone you love’s mental health and strives to eliminate the stigma associated with this discussion within the bleeding disorders community. Visit Letstalkmh.com and click Resources.

Brought to you by Sanofi

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

What does taking ownership of your bleeding disorder look like? Patrick shares his thoughts and NHF’s education staff, Brendan Hayes and Heather Hicks join us to debut a new program that could change the game. Also, we introduce Maya Bloomberg, a certified nurse practitioner, who is addressing blood disorders through social media. A can’t miss episode! 

Show Notes:

Subscribe:

The BloodStream Podcast

Take control of your health care with NHFs Own Your Path program!

This app-based program will provide you with information to navigate life with a bleeding disorder. Being able to stay on top of your treatment is easier if you are able to manage your stress, get enough sleep, move your body, and stay on top of your nutrition. 

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is made possible by Genentech. 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter