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  • Breaking Sickle Silence, A Conversation with Author James Griffin III
    2022/12/13

    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."
    .

    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


    The next episode of the Vitamin SC3 Podcast drops on Monday!

    Please tune in next week for a new episode from the Creative Elixir!


    Do you Want to Become a Sickle Cell Consortium Partner?

    Click here to become a Sickle Cell Community Consortium member!

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

    Please Subscribe.

    Help keep this podcast on air and help support the community projects that are making a difference in the sickle cell community. Please donate to the Sickle Cell Community Consortium at https://sicklecellconsortium.org/donate-to-sc3/

    Listen to the Vitamin SC3 Podcast using one of many popular podcasting apps or directories.



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    36 分
  • Town Hall Recap at University of Maryland Capital Region Health
    2022/11/21
    The Sickle Cell Community Consortium powers the VitaminSC3 Podcast. Today's show is brought to you by the Caring is Giving segment with Elle Cole. Today's conversation introduces our audience to a new hospital in the PG County Maryland area. The University of Maryland Capital Region Health held a Town Hall Meeting about we had in Prince George's County Maryland.About University of Maryland Capital Region (UMCR)University of Maryland Capital Region Health is a not-for-profit healthcare system serving the citizens of Prince George's County and the surrounding area.The mission of the new hospital is to provide high-quality, accessible healthcare services in partnership with the community.Learn more about UM Capital Regional Health's history.From the Organizer , the University of Maryland Capital Region"There are myriad of disparities systemically ingrained in health institutions across the United States that have led to inexcusable and poor health outcomes for people living with sickle cell disease (SCD). The structural disparities in medicine experienced by people with SCD are most apparent when patients seek pain relief when they are in excruciating pain from vaso-occlusive episodes— patients are often labeled as drug-seeking and left to suffer. Other issues faced by the SCD community include the lack of resources for the transition from pediatric hematology to adult SCD care and social determinants of health that play a crucial role in disease management and health equity.The PATHS (Prioritizing Access To High-Quality Sickle Cell Care in Prince George's County) project, funded by Maryland's Community Health Resources Commission, is working towards addressing these problems by increasing adult SCD expert providers at the University of Maryland, Capital Region Health's (UM Capital) new infusion clinic to meet the needs of people with SCD in Prince George’s (PG) County. By increasing resources at Children's National (CN), the project also aims to help children ages 13 and older receive transition services. This meeting will be an opportunity for the community to hear updates on the progress of the project."Today's Topic: We discussed the Town Hall Meeting Held at University of Maryland Capital Region Health Here are the questions we chatted about during our discussion:Intro (Timestamp 02:05) 1. Why is sickle cell disease an important conversation in PG County? (Timestamp 3:21) 2. What do you think is unique about our area and the new hospital? (Timestamp 6:43) 3. As a caregiver, what excites you most about the hospital, grant, and that sickle cell is a focus regarding this new project. (Timestamp 21:23)4. What are your expectations regarding transition and sickle cell treatment in PG county? (Timestamp 26:00) 5. There were various speakers, were there any speakers or messages that really resonated with you? (Timestamp 32:00) Follow Rachael TaylorInstagram: @magayaki.madeUniversity of Maryland Capital Region of HealthFollow Elle ColeInstagram: @CleverlyChangingWebsite: https://CleverlyChanging.comTwitter: @CleverlyChanginFacebook: @CleverlyChangingDonate: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 MondayPlease tune in next week for a new episode we will hear from the segment Essential RX with Dr. Lametra Scott. 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.
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    39 分
  • To Vaccinate or Not, That is the Question
    2022/11/16

    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.

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    42 分
  • My Mind, My Journey, My Healing
    2022/11/09

    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.

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    44 分
  • Finding your voice as a Young Black Male Sickle Cell Warrior
    2022/11/03

    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.
    .

    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

    Listen to Vitamin SC3 using one of many popular podcasting apps or directories.

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    50 分
  • Bonus Episode the 2022 Virtual 2nd Annual Sickle Cell Caregiver Summit
    2022/10/29

    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

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    40 分
  • Sickle Cell Disease and Health Equity
    2022/10/18

    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.

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    51 分
  • Bone Marrow Transplant: The Patient's Voice
    2022/10/11

    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.

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    41 分