What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on the evolving landscape of sickle cell research and data collection.

Dr. Kanter walks through the latest drug development approaches, such as fetal hemoglobin induction and reducing cell adhesion, while highlighting why safe data sharing through national registries is absolutely essential to advancing personalized treatments for the community.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the ⁠National Alliance of Sickle Cell Centers⁠ (NASCC).

This episode is part of Sickle Cell 101's Research 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Research 101 sponsors: ⁠⁠Agios, Pfizer⁠, and ⁠Beam Therapeutics.

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on navigating treatment options and disease modifiers.

Dr. Kanter breaks down the most prominent medications and therapies available today, including hydroxyurea, crizanlizumab, L-glutamine, and blood transfusions, explaining how patients and providers can work together to personalize care and find the best treatment path.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the ⁠National Alliance of Sickle Cell Centers⁠ (NASCC).

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: ⁠Vertex⁠, ⁠Chiesi⁠, ⁠Pfizer⁠, and ⁠Medunik⁠.

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter focuses on two pillars of quality sickle cell care: working with the right specialists and understanding the lab work that guides your treatment.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the National Alliance of Sickle Cell Centers (NASCC).

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Vertex, Chiesi, Pfizer, and Medunik.

What does good care actually look like for adults living with sickle cell disease?

In this episode of our What Good Care Looks Like for Adults with Sickle Cell series, lifespan sickle cell expert Dr. Julie Kanter breaks it down. She covers establishing a medical home, working with a sickle cell specialist, navigating the Emergency Department, and building an Individualized Care Plan that works for you.

Dr. Julie Kanter is the Co-Director of the Lifespan Comprehensive Sickle Cell Center at the University of Alabama at Birmingham and President of the National Alliance of Sickle Cell Centers (NASCC).

This episode is part of Sickle Cell 101's Care and Treatment 101 Educational Initiative, a community resource dedicated to making care information accessible and actionable for the sickle cell community.

Thank you to our Care and Treatment 101 sponsors: Vertex, Chiesi, Pfizer, and Medunik.

In this episode, we dive into the inspiring story of Hanif Mouehla, a Harvard student and former sickle cell warrior. Hanif shares his journey of growing up with sickle cell disease, from the challenges he faced in his youth to the curative treatment that changed his life.

Support this podcast: ⁠https://anchor.fm/thesicklecellpodcast/support⁠

In this episode, we explore the journey of aging with sickle cell disease through the inspiring stories of 80-year-old Ms. Pat McGill and Linda Wade. Ms. Pat shares her decades-long experience living with sickle cell, providing invaluable insight into the challenges and triumphs of aging with the condition. Linda Wade, founder of the Mark Thomas Foundation and caregiver to her late husband who had sickle cell, joins the conversation to discuss her role in supporting the sickle cell community and her personal journey of advocacy.

Support this podcast:⁠ https://anchor.fm/thesicklecellpodcast/support

Join host Maia Garrison as she speaks with passionate advocates shining a light on sickle cell disease. La'Shardae Scott, the 2022 SCAY Advocate of the Year, discusses her non-profit organization that bridges the gap by transitioning pediatric patients to adult sickle cell care. Faith Adjei-Sarpong, the Digital SCAY Advocate of the Year, shares how she inspires warriors through social media to live life fully despite having sickle cell disease. Prepare to be inspired by their dedication to raising awareness and empowering the sickle cell community.

Find:

La'shardae Scott

Faith Adeji- Sarpong

Instagram:

@faiithooo

@lashardae_scott or @scottcenteroh

Join hosts Cassandra Trimnell and Maia Garrison as they hear from Holly John, Senior Director of Patient Advocacy at Agios Pharmaceuticals, recognized as the SCAY Community Partner of the Year for her groundbreaking work integrating patient voices into drug development and advocacy. Also, meet Ayana Johnson, the SCAY Youth Advocate of the Year, a high schooler who has launched a nonprofit, lobbied for legislation, and engaged with President Biden, inspiring fellow youth warriors. Prepare to be moved by their passion and dedication to revolutionizing sickle cell care.

Find Ayana Johnson

Instagram: _ayana_lee_

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Featuring Christina Augustine and Dr. Alexander I. Ngwube, MD, this episode provides an comprehensive exploration on bone marrow transplant (BMT) for sickle cell disease, blending personal experiences with professional expertise.

A huge thank you to Be the Match for Sponsoring this episode. For more information about Be the Match, visit: https://sicklecellconnect.com

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Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support

For the month of July, we are bringing awareness to sickle cell trait. Abibat Oshiobugie Suleiman is the host for today's episode. Abi talks with special guests Abisola and Seyi Shof, also known as “the Shofs” on social media, about their involvement in the sickle cell community, their love story with SCT, the challenges they had to face with telling their families, and weighing the options for marriage and children that led them to their IVF journey with PGD testing. 

Find Abisola and Seyi Shof on

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