sickle cell trait

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.

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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

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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 ����

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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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Hope and Destiny is available at:

https://www.amazon.com/

https://hpcinternationalinc.com/bookstore

Lewis Hsu co-authored "Hope & Destiny" with Allan Platt Jr. and James Eckman.

The book aims to provide comprehensive education about sickle cell disease and accurate information about treatment regimens, medications, and medical insights to help patients and their loved ones cope with the physical, emotional, and psychological distress caused by SCD.

The revised edition provides updated information on sickle cell disease, including COVID-19's impact on the disease, pain management guidance, and new resources available to patients, parents, and caregivers.

The book series is trusted by patients, caregivers, healthcare professionals, and students around the world and has sold over 75,000 copies since its first publication.

The authors wanted to use plain language for the public and voice the stories of individuals with sickle cell disease.

The authors are also working on other literature on sickle cell trait and awareness.

Progress in the field of sickle cell disease continues to be made.

Dr. Andrew Campbell, Director of the Comprehensive Sickle Cell Disease program at Children's National Hospital in Washington, D.C graces our presence on the show. Dr. Campbell enlightens us with the latest in cures for sickle cell disease, educates us on first-of-its-kind legislation, the Sickle Cell Disease Treatment Centers Act of 2022, natural remedies, and many more insights about Sickle Cell Disease and Bone Marrow Transplant that you can't miss.

This episode is a must-share for anyone who is personally or knows someone who is experiencing sickle cell anemia. Press play now!

Making the decision to go through a transplant is a difficult, if not heart wrenching, decision.  How does one make the decision to go through transplant? Where does the peace come from to move forward with a life changing decision? This episode reveals insights that helped Sofia's family make this difficult choice. Other topics include: Sofia's mental and emotional state leading up to the transplant, donor match types, finding your support system, and preparing financially to go through the transplant process. 

Ryan Clark is a Super Bowl Champion, Pro Bowler, NFL Analyst, and an MMA commentator. After signing with the New York Giants as an undrafted free agent in 2002, Ryan went on to have a successful 13-year career in the NFL including a Super Bowl XLIII title and two AFC Championships. In 2007, Ryan faced a life-threatening illness and returned courageously to the NFL to continue his football career. In this conversation, Andrew and Ryan explore ways to prepare like a champion, differentiate yourself from others, and stay tough amidst adversity.

Show highlights:
1:56 - Staying confident after not being selected in NFL draft
2:05 - Advice from Coach Nick Saban
3:19 - Consistency and playing 30 consecutive games at LSU
4:41 - Intellectual side of football, preparation, and being prepared for what's coming
7:40 - Preparing with urgency and differentiating yourself from others
10:18 - Learning how to evolve your preparation to fit your needs and skills
12:59 - How to feel ready for a new, challenging opportunity
14:55 - "You don't prepare to win. You prepare to make the other team beat you."
16:33 - Determining how you learn and positioning yourself for success
19:58 - Ryan's life-threatening health crisis due to sickle cell trait
23:01 - Preparing for the Super Bowl and how to stay focused when out of routine
25:07 - NFL taunting penalties and importance of letting passion shine through

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Shalawn and Jerrick have dealt with the secondary and tertiary effects of Sickle Cell Disease and have had countless strokes since he was a child and are not allowing that to stop him from living his life.

The Williams family is a family of 5 and they unite together as advocates to fight not only against Sickle Cell Disease, but also on behalf of any and all under represented health communities.

Tristan who has dealt with the secondary and tertiary effects of Sickle Cell Disease has had countless strokes since he was a child and is not allowing that to stop him from living his life to the fullest.

Ronald Johnson is a member of the Board of Directors of the South Central PA Sickle Cell Council and the caregiver for his mother.  Ronald is the only child in his family with Sickle Cell Disease and 2 of his siblings have the trait.

Sickle Cell Disease is the leading hereditary blood disease in the nation but one of the least funded diseases.   In order to bring the proper funding, support and attention to this disease we launched this podcast to increase awareness to ensure that even at the local support that will influence the national support from  national community leaders.   

We  interview each week individuals and families about their path that include their struggles, successes and tragedy while dealing with sickle cell so that we can all have a human life attached to the label of sickle cell disease and not just a name of a diagnosis.

As the host  my  hopes are to make sure that during the interviews we can touch upon the areas not yet known among most health professionals, community leaders and others who can assist lead the charge against this horrific disease.sick

In this episode I cover sickle cell anaemia.

If you want to follow along with written notes on sickle cell anaemia go to zerotofinals.com/medicine/haematology/sicklecellanaemia/ or the haematology section in the Zero to Finals medicine book.

This episode covers the definitions, types, tests, causes and treatments of sickle cell anaemia. 

The audio in the episode was expertly edited by Harry Watchman.