blood disorders

Welcome back to "Black Blood Heals." with host Tamara Weston.  In today's episode, we dive into the critical world of stem cell donation and transplantation. Our esteemed guest, Dr. Brandon Blue, a hematologist-oncologist, brings his invaluable insights to the table as we unpack the crucial role of HLA markers in finding stem cell donor matches, the urgent need for increased African American representation in donor registries, and why this ethnic disparity exists.

We'll explore the barriers to participation, such as a lack of awareness and education within the African American community, and discuss strategies to boost donor numbers. With African Americans currently having only a 29% chance of finding a stem cell match, Dr. Blue highlights the significance of diverse registries, the importance of tailored healthcare education, and the advancements in mismatched donor trials that offer new hope.

From the medications, like filgrastim, that prepare potential donors, to the details of autologous and allogeneic transplants, we'll leave no stone unturned. Dr. Blue also addresses the broader systemic changes needed within healthcare, emphasizing diverse representation among providers, and encourages a culture of openness regarding health issues.

Join us as we tackle how we can support those affected by blood-related cancers, the journey of patients preparing for transplants, and why your role in this fight is more important than ever. It's time to close the gap, one donor, one education session, one life-saving stem cell transplant at a time. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals. This week your host Tamara Weston explores the inspiring story of Donna and Tiana. Tiana, a selfless stem cell donor from Ohio, shares her journey of joining the registry and becoming the life-saving match for Donna, who faced the challenges of myelofibrosis.

Initially, Donna struggled with the complexities of her diagnosis, but her sister's proactive decision to seek the best Cancer Hospital in Houston set the stage for a life-changing event. Donna couldn't believe it when she heard that not just one, but two donors had been found. It was her second chance at life. Tiana's perspective adds a unique layer to the narrative. Tune in to learn about her initial hesitations and the selfless act that followed. She flew from Atlanta to donate bone marrow in DC, grappling with the emotional weight of potentially saving a life. 

Join Us as we explore the depths of their experiences, triumphs, and the profound impact of a second chance at life. Don't forget to share this episode with your friends and family, and visit bethematchblk.orq to learn more about how you can join the registry.

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

As we closed 2023, the Food and Drug Administration (FDA) approved two gene therapies to treat sickle cell disease (SCD). These potential curative therapies include CASGEVY™ (exagamglogene autotemcel [exa-cel]) from Vertex Pharmaceuticals Incorporated and CRISPER Therapeutics, and LYFGENIATM from bluebirdbio. While there is a lot of excitement for these advances, the impacts of these therapies are not currently known. Like with many therapies, the impact on women and their future fertility are among the unknowns and are areas of concern for individuals living with sickle cell disease and their healthcare providers.

Please join 7-2-1 for this special edition episode, How New Gene Therapies for SCD May Impact Women’s Fertility, with WGSCD LAN Chair, Dr. Alecia Nero, and special guest, Dr. Kelly Acharya, a Reproductive Endocrinologist, and Infertility Specialist with Duke Health. Together, they discuss the areas of concern for women and girls living with SCD and consider what the future may hold for those who are able to receive these life-changing treatments so that they may stay informed in the decision-making process.

As physicians taking care of young girls and women with HMB, we are often faced with a challenging patient who is at a high risk for developing thrombosis due to a family history, a past personal history of thrombosis or medical conditions that could be a trigger for developing blood clots. In this podcast, we will be speaking with our experts on thrombosis and HMB to help us navigate through these difficult decision-making scenarios. We will be referring to certain brand names of hormonal therapies as our listeners are familiar with those rather than the complicated generic nomenclature. We will use gender-neutral language whenever possible, but when discussing the results of clinical studies, we may refer to women or girls because that is the language specifically used by the authors. 

The pill aka “oral contraceptive pill, OCP “, “birth control pill” is a misnomer when used solely for HMB by a pre-teen or teenager and unfortunately, can be associated with a stigma. In the true sense, pill used for heavy period flow is in fact hormonal therapy. We will be referring to the pill also as hormonal therapy during this discussion and will clarify several misconceptions about it, thereby hoping for a wider acceptance of these medications.

To dispel these stigmas, we have our esteemed guest Dr. Janice Bacon, who is a general obstetrician & gynecologist with a sub-specialty certification in pediatric and adolescent gynecology. She is currently in private practice at Lexington Medical Center and is a Clinical Professor of Obstetrics and Gynecology for the University of South Carolina, School of Medicine in Columbia. Dr. Bacon has a strong interest and background in helping patients with menstrual problems. She is the past president of the North American Society for Pediatric and Adolescent Gynecology (NASPAG) and currently serves on the board of directors and education committee for the Foundation for Women and Girls with Blood Disorders (FWGBD).

On this week’s episode, Shari Jones, MD, PhD, joins the doctors to talk about Oncology and Hematology. Dr. Jones of OU Health Stephenson Cancer Center at Norman Regional, talks to Dr. Krishna and Dr. Veer about the importance of screenings, cancer prevalence, treatment and more. We thank Dr. Jones for sharing her knowledge and expertise in Hematology and Oncology with our Vital Visions listeners!

Guest Bio:
Shari Jones, MD, PhD, specializes in the following types of cancer:

• Breast
• Colorectal
• Hodgkin's Lymphoma
• Kidney
• Leukemia
• Lung
• Melanoma
• Multiple Myelomga
• Non-Hodgkin's Lymphoma
• Prostate

Dr. Jones has a PhD in microbiology from the University of Oklahoma. She also received the Leonard Tow Humanism in Medicine Award which recognizes graduating students who demonstrate both clinical excellence and outstanding compassion in the delivery of care and who show respect for patients, their families, and healthcare colleagues.

A career in oncology was an easy choice for Dr. Jones.

“I knew right away in medical school while on rotation in oncology that this would be the field for me,” said Dr. Jones. “I love taking care of people. Also, with all the clinical advances in the field it was natural for me and tailors towards my scientific background.”

Dr. Jones is passionate about patient-centered care and education.

“The field of oncology is heading toward personalized medicine where we individualize therapy based on a patient’s tumor biology instead of giving everyone the same therapy as what was done in the past. This is very exciting!”

Helping patients feel comfortable and limiting their stress and anxiety is a priority to Dr. Jones.

“I believe that patients do better during therapy if they understand their disease and treatment. I will spend time with patients to explain every step and what to expect. I will listen to their concerns with the hope that they go home feeling at ease thereby eliminating any confusion or frustration.”

Dr. Jones wants her patients to know she is dedicated to their care.

“I am committed to finding the best therapy for them and to helping get them through treatment. I will help to provide support so that they don’t feel alone through the process.”

Dr. Jones was born and raised in Norman and has lived there for the last 15 years. In her spare time she enjoys playing with her children, traveling and gardening.

Links:
Shari Jones, MD, PhD
Norman Regional Cancer Care
Blog - OU, Norman Regional Partner for New Cancer Center
Blog -  OU Health Begins Operating the Medical Oncology Clinic and Infusion

This podcast is for educational purposes only. The information in this show is not to be used as medical advice. If you are needing medical care, please consult with your physician.

Norman Regional is hiring! See all our open opportunities here: https://careers.normanregional.com/careers-home/

In today’s episode you’ll be joining Tamara Weston as she discusses the mental preparation required to become a member of the stem cell registry and the potential consequences of choosing not to go forward with a stem cell transplant when you are called to donate. Joining Tamara this week is Caitlyn Squire, a Donor Services Social Worker at Be The Match. 

Caitlyn’s role was created in 2019 to help and support the donors, whom we would not be here without. We know that there is this crazy thing called life that can change our best intentions. If you join the registry when you’re 18, but you get that call at 35, your life is going to look very different. How can you turn a no, that was once a yes, into a yes? Tune in to find out. 

At the end of the day, joining the registry is about giving hope, it’s about giving opportunity. You could give someone 3 more months of kissing their kids at night, or an extra 3 years that could help them get to their son's graduation or their daughter's wedding. It’s our job here to inspire, to educate and to help you make the best decision for you, whether or not that’s donating. Hopefully this episode has helped inspire you to join the registry, because in the end it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Imagine being the mother of three children with a life threatening disease. A disease that doesn’t care about age, time or place. How do you bottle the strength, the faith and the will to beat a disease that doesn’t fight fair? Today Tamara Weston is joined by Millapar Dahn, Founder and CEO of MTS Sickle Cell Foundation Inc and the mother of three daughters suffering from sickle cell disease.

Get an insight into the work that Millapar is doing for the sickle cell community and what her day to day life looks like as the mother of three daughters suffering from sickle cell disease. Over the last ten years her children have endured over 10 surgeries and over 100 blood transfusions but throughout this episode you’ll hear how this inspiring mother has been fueled by these battles to help this community in so many ways. 

June 19th is also sickle cell awareness day so Millapar invites you to use your Juneteenth events to help spread awareness for this disease because it really will require us to heal us. Share this episode to help raise awareness and visit mythreesicklers.org to learn how you can get involved with Millapar and the work that she’s doing for the sickle cell community. 

Resources:

• Find ways to help at https://mythreesicklers.org/ 
• Subscribe to the podcast and tune in each week
• Spread the word, share this podcast with a friend
• Visit https://bethematchblk.org to learn more about how you can join the registry 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals by Be The Match. This week, your host Tamara Weston is joined by Stephanie Lerach, senior immunogenic specialist at Be The Match. Stephanie and her team work with Be The Match to help transplant centers find the best matches for searching patients. You’re going to want to get a pen and paper ready because this episode is going to dive into the technicalities of HLA typing, how our genes and proteins work, and how Be The Match actually finds donor matches for patients. 

HLA testing is complex and around 70% of patients are going to have to turn to the registry to find a match. So let’s dive into what HLA testing is and why it’s important. This episode will cover what it takes to find a match but you’ll also learn about how your HLA tissues help protect your body, where you get your HLA typing from and a deeper insight into the role that ethnic background plays in stem cell donation. 

Black Blood Heals is here to act as a resource and break down barriers to help you feel more comfortable joining the registry, and more confident in understanding the process of stem cell donation. Visit bethematchblk.org to learn more about joining the registry and remember, it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

A transcript is available online

Sickle cell disease is an inherited disorder of the blood protein hemoglobin. It has multiple ways to impact the health of someone with the disease ��� with a hallmark symptom being excruciating chronic pain. The vast majority of people with sickle cell trait and sickle cell disease are Black. Until relatively recently, there has been only one drug to treat the disease.

On this week's program, host Se��n Collins talks with Dr. Titilope Fasipe, co-director of the Sickle Cell and Thalassemia Program at Texas Children's Cancer and Hematology Center in Houston about advances in both the treatment of sickle cell disease and progress toward a cure.

.

Titilope Fasipe, M.D., Ph.D.

Co-Director

Sickle Cell & Thalassemia Program

Texas Children's Cancer & Hematology Center

Assistant Professor

Pediatrics & Hematology/Oncology

Baylor College of Medicine

Houston, Texas

.

To produce this episode, we collected stories from people living with sickle cell disease. These interviews are excerpted in this podcast episode and we invite you to listen to more of the conversations by following the links below.��

Andre Marcel Harris speaks with his sister Alexis Harris

Sijaama Branch talking with producer Scott Acord

Heather Avant in conversation with her cousin Dr. Bria Davis ����

.

.

To learn more:

A full list of resources is available on our website

Sickle Cell & Thalasemmia Program �� (Texas Children's)

Sickle Cell Disease Coalition

A ���Narcotics Contract��� for a Patient With Sickle Cell Disease ����Pediatrics / (the "care-seeking" article)��

Building access to care in adult sickle cell disease ��Blood Advances

Cure Sickle Cell Initiative ��NIH

Sickle Cell Gene Therapy Education Project �� NIH

Addressing SCD: A Strategic Plan and Blueprint for Action �� NASEM

A Review of Sickle Cell Disease (and Reply) JAMA

Hospital Use and Mortality in Transition-Aged Patients With Sickle Cell Disease ��Hospital Pediatrics

Still seeking balance in opioid management for acute sickle cell disease pain ����Pediatric Blood & Cancer

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.

��

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You're in for a treat, WITH listeners! Have you ever interacted with a doctor and asked yourself, "how can I clone this provider so everyone can have this great experience?"  Well, I have and this is the doctor I wish every single person receiving medical care could receive it from. Dr. Gregory Yanik is the Director of the Pediatric Blood and Marrow Transplant Program at the University of Michigan Medical Center in Ann Arbor, Michigan. 

From the moment you press play, you will hear why he's the GOAT. This is a can't miss episode. 

Welcome back to Black Blood Heals. This week, your host Tamara Weston is joined by Chelsy Shoger, marketing research manager at Be The Match. Learn  how Chelsy and her team work specifically to engage the community and encourage them to open up to sincerely share with us why they will or why they will not join the registry.

Chelsy has heard countless, first hand stories about the mistreatment of patients within Black and African American communities that have continued to spread distrust and fear towards the healthcare industry. In this episode you’ll hear the real world hurdles that the community faces from a fear of seeing their own doctor for a physical to a mother still being mistreated simply because of the color of her skin.  

Tune in to learn more about what Be The Match does with the community feedback that Chelsy’s team gather, and how Be The Match is working to show up 365 days a year, as opposed to 28 days for Black History Month. Subscribe to Black Blood Heals and share this episode to help raise awareness for the work that Be The Match is doing to help grow the donor registry within ethnic and African American communities. Remember, it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

This week Tamara Weston is joined by Xavier Brandon, Supervisor of HBCU Programs at Be The Match. Learn how both Xavier and Tamara got involved with Be The Match and the work that’s being done on the ground, in our communities to help the registry for Be The Match grow.

Community involvement looks like being outside, having those difficult conversations with people and busting those myths around bone marrow and stem cell transplants. There’s a deep distrust between Black and African American communities and the healthcare industry. The most important work that Be The Match can do is rebuild that trust, and that’s simply work that cannot be done with digital campaigns and social media. 

Today, Xavier is training the next generation of interns and change makers with Be The Match. Throughout this episode you’ll feel his passion for Be The Match, his reminders that this has to be a community movement, and that we all have to work together to save each other. 

If you only take away one piece of advice from this episode, it’s a reminder to be bold. You weren’t put on this earth to be mediocre, you were put on this earth to make an impact and change a life. 

Get involved with Be The Match today, because it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

There are over 70 blood disorders known today. Diseases like Leukemia, Lymphoma, and Sickle Cell Anemia – but did you know that a cure can exist? This season of Black Blood Heals is going to focus on providing you with information from experts, patients, and life-saving change makers to learn more about stem cell and bone marrow transplants. 

Black Blood Heals is a resource for anyone looking for information about these transplants as a possible cure. In each episode, your host Tamara Weston will share facts, dispel myths and talk with experts and guests whose lives are impacted by a need for stem cell transplants. 

Tune in every week to learn how you can help change the lives of some of the most vulnerable in our communities. 

Because in the end it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

In this episode, your hosts continue to explore some great information and facts about the use of IUDs for heavy menstrual bleeding and are joined by a well-known expert in the fields of adolescent medicine and reproductive health, Dr. Claudia Borzutzky.

Recently, there has been a lot of talk about IUDs. As healthcare professionals, we are seeing more and more providers prescribing them as hormonal therapy for bleeding disorders. In this episode, your hosts discuss demystifying IUDs with Dr. Patricia Huguelet, Associate Professor and Chief of Pediatric and Adolescent Gynecology at Children’s Hospital Colorado.

For years, providers have heard their patients say, “But my period has always been this heavy. That’s normal for me.” But what does “normal” even mean when we talk about periods? In this episode, your hosts discuss how to differentiate normal vs. heavy menstrual bleeding and tell you more about how heavy menstrual bleeding could be a sign of an underlying bleeding disorder. They also speak to a mother and daughter team about their experiences with normal vs. heavy.

Please note: In our discussion in this episode, we mention "non-hormonal therapy". One non-hormonal therapy that Doctors will utilize for the management of heavy menstrual bleeding is tranexamic acid.

Dr Jose Leal discusses a study of the costs related to malignant and non-malignant blood disorders in Europe in 2012.

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