Finding your voice as a Sickle Cell Warrior

James Griffin is a warrior and sickle cell advocate who lives in Wisconsin. In this episode, he spoke with Mia Robinson about his book "Breaking Silence."
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Today's show is brought to you by the Creative Elixir segment with Mia Robinson. The Vitamin SC3 Podcast is powered by The Sickle Cell Community Consortium.

About James Griffin III

James Griffin was diagnosed with sickle cell at the age of two. He is a writer, speaker, sickle cell advocate and a published author. He is best known for his book Breaking Silence: Living With Sickle Cell Anemia. In 2012, he began advocating for sickle cell, and since then he has been
using his voice to make an impact to change the lives of others. As a sickle cell advocate his goal is to improve the quality of care for patients within the medical systems around the world, and eliminate the stigmas and biases associated with this condition. James has spoken in front of healthcare professionals, future med students; including at one of the most prestigious institutions, Harvard University, pharmaceutical and biotech companies, patients, caregivers, and state legislators. Along with that he has been a feature on television, in health magazines, online in news articles, and other media outlets all centered around awareness for sickle cell. He was born in Milwaukee, Wisconsin and continues to support and build partnerships with sickle cell nonprofit organizations locally and nationally.

Sickle Cell Warrior the breakdown of the conversation

• The process of writing "Breaking Silence" (Timestamp 12:25)
• Did writing the book help you process some of the emotions that come with living with sickle cell? (Timestamp 15:10)
• What motivates you to continue to go on despite sickle cell issues that may come your way? (Timestamp 16:30)
• It's good to be around positive people (Timestamp 18:20)
• What are some of the things you do to stay healthy? (Timestamp 18:40)
• Transition and comprehensive care in the Sickle Cell Community (Timestamp 23:00)

Breaking Silence: Living With Sickle Cell Anemia
(affiliate link, the Vitamin SC3 Podcast will receive a small commission when you use this link)

Social Media Tags:

Facebook: https://www.facebook.com/Jamesace21

Email: JamesGriffin3@yahoo.com

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Today's show is brought to you by the Essential RX segment with Dr. Lametra Scott. The Sickle Cell Community Consortium powers the VitaminSC3 Podcast.

Dr. Lametra Scott and Lindsey Dayer are two board-certified pharmacists who discuss why people living with sickle cell disease should get vaccinated, and they dispel some vaccine myths that exist.

About Lindsay Dayer

Lindsey Dayer received her PharmD degree from the University of Arkansas for Medical. Sciences (UAMS) College of Pharmacy (COP) in Little Rock, AR. She completed a PGY1 pharmacy practice residency at the University Hospital in Little Rock in 2009 and obtained board certification in ambulatory care pharmacy in 2011.

Dr. Dayer is an Associate Professor and Director of Health-System Rotations (IPPE and APPE) for the UAMS COP Experiential Program. She also develops ACPE-accredited continuing education programming for pharmacists and other health professionals. Additionally, she serves as the clinical pharmacist in the state’s only adult sickle cell disease clinic.

On the local level, Dr. Dayer currently serves on the Arkansas Association of Health-System Pharmacists (AAHP) New Member, Student and Resident Council. She helps develop experiential education-related content for the AAHP annual seminar on a rotating basis. She is a faculty advisor for the Student Society of Health-System Pharmacists and serves on various other committees within the college.

Nationally, Dr. Dayer is an active member of the American Association for Colleges of Pharmacy (AACP) and currently serves as a member of the Champion Advisory Committee. She’s served as a reviewer for the AACP New Investigator Award since 2018 and has done in the Experiential Education Section as an abstract reviewer. She recently served as the Chair and Immediate Past Chair for the AACP Pharmacy Practice Awards Committee.

Before joining the experiential department at UAMS, Dr. Dayer’s professional experience includes a background in oncology and palliative care clinical pharmacy. Dr. Dayer’s areas of scholarship include clinical research on sickle cell disease and pain management, pharmacy education (specifically interprofessional education and objective structured clinical examinations), and experiential education (IPPE and APPE remediation and assessment).

Antibiotics like penicillin and vaccines

• Sickle cell patients and spleen complications, and why parents should give their child the proscribed antibiotics. (Timestamp 6:10)
• Answers why there was an 84% decrease in pneumococcal infections (Timestamp 8:34)
• Meningococcal vaccines, blood and bacterial infections. (Timestamp 13:30)
• The bodies immune response (Timestamp 17:00)
• Haemophilus Vaccines (Timestamp 17:59)
• Flu vaccines and what benefits are given to patients (Timestamp 19:00)
• Covid vaccines (Timestamp 25:22)
• Dealing with the symptoms and after-effects of being vaccinated. (Timestamp 29:55)

Quotable phrase:
It takes 2 weeks to be fully immunized to be able to fight it off [after receiving the Covid vaccine]. - Lukhan Cooper

Follow our host, Dr. Lametra Scott:

• Website: Breaking The SSickle Cell Cycle Foundation
• Instagram @brkthesscycle
• Facebook brkthesscycle

Donate:
Did you enjoy listening to this episode? If so, please consider donating to keep this podcast going. Donations are tax-deductible and are made to the Sickle Cell Community Consortium.

The next episode of the Vitamin SC3 Podcast drops on Monday

Please tune in next week for a new episode we will hear from the segment Selfcare is Healthcare with Dr. Majorie Brewer.

Do you Want to Become a Sickle Cell Consortium Partner?

Become a Sickle Cell Community Consortium member by clicking here to learn more.

Follow their Instagram and Facebook pages to learn more about the Sickle Cell Community Consortium.

Today's show is brought to you by the Selfcare is Healthcare segment with Dr. Marjorie Brewer. The Sickle Cell Community Consortium powers the VitaminSC3 Podcast.

About Phillip Okwo today's guest

Phillip Okwo is a business finance manager who has sickle cell disease. Okwo travels between Atlanta and Houston for work. He has been in several videos about sickle cell disease, and is the oldest of three children. Both of his parents are teachers. He is the proud father of two children who have sickle cell trait.

Finding the right match:

• Therapist #5 - First black therapist. (Timestamp 19:00)
• Regularity - Frequency of seeing a therapist moved from once a week to every other week. (Timestamp 21:00)
• She was the first person to white board his sessions, which helped because he was a visual learner (Timestamp 22:00)
• This is a personal experience. (Timestamp 23:55)
• Health maintenance (Timestamp 24:30)
• Mental and physical health matters (Timestamp 31:00)

Follow our guest, Phillip Okwo:

• Website: Phillip Okwo: The Crisis of Living Life Interrupted by Sickle Cell Disease
• LinkedIn: Phillip Okwo
• Instagram: @scdwarrior1

Follow our Host, Dr. Majorie Dejoie-Brewer
Instagram: @dejoiebrewer

The next episode of the Vitamin SC3 Podcast drops on Monday

Please tune in next week for a new episode we will hear from the segment Caring is Giving with Elle Cole.

Do you Want to Become a Sickle Cell Consortium Partner?

Become a Sickle Cell Community Consortium member by clicking here to learn more.

Follow their Instagram and Facebook pages to learn more about the Sickle Cell Community Consortium

Donate:
Did you enjoy listening to this episode? If so, please consider donating to keep this podcast going. Donations are tax deductible and are made to the Sickle Cell Community Consortium.

Finding your voice as a Sickle Cell Warrior

DeMitrious Wyant is a patient advocate from Des Moines, Iowa, who currently resides in Orlando, Florida. He spoke with Mia Robinson about growing up with sickle cell disease.
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Today's show is brought to you by the Creative Elixir segment with Mia Robinson. The Sickle Cell Community Consortium powers the VitaminSC3 Podcast.

About DeMitrious Wyant

DeMitrious Wyant has Sickle Cell Disease type SS and has battled with the disease his whole life.

Despite being In and out of the hospital with countless surgeries and blood transfusions, DeMitrious is a business owner and operator of YOUNG BLACK AND TALENTED LLC. With special services as a Personal Chef and Catering with “Your Best Taste Catering” in Orlando, Florida.

Sickle Cell Warrior

A Supernatural human with many talents, DeMitrious is a Published Music Writer with music streaming on iTunes, Apple Music, Spotify, and Tidal, expressing his life with Sickle Cell. Mr. Wyant is also on Youtube with a Podcast Titled “The Souljah Strong Way '' where he educates the world on Sickle Cell and healthy alternatives to live well with the disease. He also directed, shot, and edited an educational Documentary on his battle with Priapism (a symptom in males caused by sickle cell) titled “A Day In The Life Of A Sickle Cell Souljah: Priapism Edition.” Following the Documentary, Mr. Wyant created an educational video, presentation, and brochure for males on how to manage Priapism and what steps to take before going to the hospital titled “Save The Male Trunks,” powered by the SCCC. All this can be found on his website artheprophet.com

DeMitrious plans to continue to be a voice for Sickle Cell and educate the world on the disease while encouraging his fellow warriors to take care of themselves and keep fighting! DeMitrious likes to encourage the community to “have faith, trust yourself, live well, eat clean and Never Give Up!” - Sickle Cell Souljah

Social Media Tags:

Youtube: https://www.youtube.com/artheprophet
Instagram: https://www.instagram.com/artheprophet/
Facebook: https://www.facebook.com/artheprophet
Website: artheprophet.com

Email: sicklecellsouljahstrong@gmail.com

DeMitrious is well known in the sickle cell community for eating healthy, teaching others about priapism, and being a patient advocate who raps about his life from an authentic place.

The next episode of the Vitamin SC3 Podcast drops on Monday

Please tune in next week for a new episode we will hear from the Caring is Giving with Elle Cole segment.

Do you Want to Become a Sickle Cell Consortium Partner?

Become a Sickle Cell Community Consortium member by clicking here to learn more.

Follow their Instagram and Facebook pages to learn more about the Sickle Cell Community Consortium.

Subscribe

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This is a bonus episode of the VitaminSC3 Podcast.

Atlanta (October 26, 2022) - The Sickle Cell Community Consortium is excited to announce the 2022 Virtual 2nd Annual Sickle Cell Caregiver Summit in partnership with Cleverly Changing, LLC.

The Sickle Cell Caregiver Conference will be completely virtual. The 2022 Virtual 2nd Annual Sickle Cell Caregiver Summit is dedicated to educating, providing resources, and a space for networking among sickle cell caregivers globally.

The theme is Trust Your Instincts: Caring, Connecting and Creating. The Caregivers Summit was organized by sickle cell caregivers for caregivers. Caregivers know firsthand the necessity to keep going when caring for loved ones with chronic illnesses like sickle cell disease. Elle Cole, mom of a 14-year-old sickle cell patient, says, "Having a sickle cell caregiver conference is vital during the pandemic as many of us feel isolated because our loved ones have compromised immune systems. By getting together virtually, we recognize that we are not alone in our joys and challenges. This is an opportunity for us to encourage each other and share our experiences.”

The title sponsor is Vertex Pharmaceuticals. Additional sponsors include Global Blood Therapeutics, Agios Pharmaceuticals, and more. Educational sessions are geared towards caregivers, parents, grandparents, siblings, guardians, friends, and care workers of individuals living with sickle cell disease. Activities include family games, trivia games, networking opportunities, and more.

The "Sickle Cell Caregiver Summit" will be held from November 4h through November 6th, 2022, with early check-in and welcome on Friday, November 4th. Sessions begin daily at 7 am PST/10 am EST and include dynamic sessions, education, and interaction with other caregivers. The conference is open to the public. For more information, visit scdcaregivers.org.

The Sickle Cell Community Consortium is a 501(c)(3) non-profit formed in 2014 to "harness and amplify the power of the patient voice." The Consortium includes sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners, and medical and research advisers. Donations to the Sickle Cell Community Consortium help define problems and gaps in the sickle cell community, identify strategies to address those needs and gaps, and determine the CBO, Community, and Corporate partnerships best equipped to implement those strategies to achieve significant and sustainable change.

To learn more, visit scdcaregivers.org. Follow The Sickle Cell Community Consortium at facebook.com/SCCConsortium, Instagram at instagram.com/SCCConsortium, Twitter at (@SCCConsortium), and the VitaminSC3 Podcast. Scholarships are available. Please email caregivers@sicklecellconsortium.org for a fee waiver.

Cleverly Changing, LLC is a media company established by Carley Cole-Cavins. The company empowers moms, homeschoolers, and advocates for children with special needs such as Sickle Cell Disease and Type 1 Diabetes. The company publishes literature for children living with sickle cell disease, a homeschool podcast called the Cleverly Changing Podcast and creates online content for health literacy and wellness. Follow Cleverly Changing at facebook.com/CleverlyChanging, Instagram at instagram.com/CleverlyChanging, and Twitter at (@CleverlyChangin).

Download images of the event to share at SCD Caregiver Summit Press Kit

Today's show is brought to you by the Essential RX segment with Dr. Lametra Scott. The Sickle Cell Community Consortium powers the VitaminSC3 Podcast. Dr. Lametra Scott, is a board-certified pharmacist, and Michael Smith, is a Cardiovascular Surgeon.

About Our Guest Dr. Michael Smith

Dr. Michael Smith MD, FACC, FACS, FCCP is CEO and Founder of Marti Health and a Board Certified
Cardiovascular Surgeon. With more than two decades of clinical leadership experience including Medical
Director of Oncology and Chief of Cardiovascular and Thoracic Surgery at Atlanta Medical Center, Chief
Medical Officer of Heritage Provider Network, Regional Vice-President and Medical Director of Medicare for
Wellpoint’s Central Region, and Deputy Chief Health Equity Officer for CVS Health, Michael has dedicated his
professional life to driving value-based care delivery through the advancement of Health Equity.
In leading Marti Health, Michael and his team, are beginning their health equity mission to drive better care
coordination through patient engagement with Sickle Cell Disease.

Additional bio info:

1. Fellow of the American College of Cardiologists
2. Fellow of the American College of Surgeons
3. Fellow of the College of Chest Physicians
4. Part of the clinical faculty at Morehouse School of Medicine
5. Authored several articles and served as an invited speaker on Health Equity - most recently at the
6. Milken Institute Conference
7. Led the first lung cancer screening program in GA
8. Started the first bloodless Cardiac Surgery program in GA (2 nd in the Southeast)
9. Submitted a patent for an evidence based comprehensive care coordination model for chronically ill individuals.

Keypoints within the conversation Sickle Cell Disease and Health Equity

• Social determinants (Timestamp 05:30)
• Addressing the real needs of the Sickle Cell Community (Timestamp 13:13)
• The app should allow patients to share their combined experiences on how they are treated. (Timestamp 13:39)
• Community based participation (Timestamp 23:00)
• Sickle Cell Guidelines (Timestamp 30:39)
• Bias is a natural occurring fact that exists among humans.(Timestamp 35:30)

Follow our host, Dr. Lametra Scott:

• Website: Breaking The SSickle Cell Cycle Foundation
• Instagram @brkthesscycle
• Facebook brkthesscycle

Follow our guest, Dr. Michael Smith:

• www.linkedin.com/company/martihealth/
• Twitter @martihealth
• Instagram @martihealth
• Website: www.martihealth.com
• Best email and phone number to reach you: michael@martihealth.com;

Donate:
Did you enjoy listening to this episode? If so, please consider donating to keep this podcast going. Donations are tax-deductible and are made to the Sickle Cell Community Consortium.

The next episode of the Vitamin SC3 Podcast drops on Monday

Please tune in next week for a new episode we will hear from the segment Selfcare is Healthcare with Dr. Majorie Brewer.

Do you Want to Become a Sickle Cell Consortium Partner?

Become a Sickle Cell Community Consortium member by clicking here to learn more.

Follow their Instagram and Facebook pages to learn more about the Sickle Cell Community Consortium.

Today's show is brought to you by the Essential RX segment with Dr. Lametra Scott. The Sickle Cell Community Consortium powers the VitaminSC3 Podcast.

Dr. Lametra Scott, a board-certified pharmacist, and Lukhan Cooper, a sickle cell patient who received a bone marrow transplant. She shared the process and her recovery experience.

About Lukhan Cooper's journey

Lukhan Cooper is a photographer whose life reflects the following quote: "Be like a tree. Stay grounded, connect with your roots, turn over a new leaf, bend before you break, enjoy being unique, natural beauty, and keep growing." With roots in Mississippi, Lukhan spent most of her life in Chicago, working hard while learning to thrive with Sickle Cell.

Despite the doctors saying she couldn't have children, she gave birth to three healthy children. Lukhan showed them the value of rebounding after divorce, reinventing herself by getting another degree in film, and giving back by being on the board of various women's organizations & Breaking the SSickle Cell Cycle. She now resides in Murfreesboro, TN, and enjoys spending free time with her family.

During this episode, you will learn why Lukhan Cooper, a sickle cell warrior considered a bone marrow transplant.

Finding a new doctor

• Jaundice and sickle cell patients (Timestamp 5:18)
• A change in perspective, from leaving the hospital to accepting the best doctor. (Timestamp 9:55)
• Iron Overload. (Timestamp 11:37)
• A rebirth (Timestamp 24:38)
• Lukhon's daughter donated her bone marrow (Timestamp 25:00)
• Lukhon was on over seventy medications in the hospital. When she was discharged, she was only taking about thirty-two medications. Timestamp 27:02)
• Recovery Process (Timestamp 28:11)
• Low-grade fevers (Timestamp 30:12)

Quotable phrase:
[Regarding her bone marrow transplant]. They preplanned for anything that happened. - Lukhan Cooper

Follow our host, Dr. Lametra Scott:

• Website: Breaking The SSickle Cell Cycle Foundation
• Instagram @brkthesscycle
• Facebook brkthesscycle

Donate:
Did you enjoy listening to this episode? If so, please consider donating to keep this podcast going. Donations are tax-deductible and are made to the Sickle Cell Community Consortium.

The next episode of the Vitamin SC3 Podcast drops on Monday

Please tune in next week for a new episode we will hear from the segment Selfcare is Healthcare with Dr. Majorie Brewer.

Do you Want to Become a Sickle Cell Consortium Partner?

Become a Sickle Cell Community Consortium member by clicking here to learn more.

Follow their Instagram and Facebook pages to learn more about the Sickle Cell Community Consortium.