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 

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.

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 Taylor
Instagram: @magayaki.made
University of Maryland Capital Region of Health

Follow Elle Cole
Instagram: @CleverlyChanging
Website: https://CleverlyChanging.com
Twitter: @CleverlyChangin
Facebook: @CleverlyChanging

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 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. 

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. 

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. 

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

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

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

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. 

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. 

About Andressa Hunsel Ambrose and Alan Ambrose
Andressa Hunsel and Allan Ambrose are the parents of an adolescent sickle cell warrior. Allan had three children from a previous relationship, and Andressa had one daughter. When they married, sickle cell affected their home dynamic.

Andressa is a Sickle Cell advocate and author of the children's book “Keemaya and the Beach, My journey living with Sickle Cell.” Professionally, she is the founder and CEO of Hunsel Business Management Consultancy. 

As an author, she has created and designed different educational content for kids living with sickle cell disease. In 2020 she published a book, posters, pain rating scales, and fun activities for kids. And in 2021, she launched the 2D animated movie of her children's book.

Listen to this podcast and learn from both Andress and Allan.

Today's Topic: Making Sickle Cell Disease A Priority With Andressa and Allan
Here are the questions we chatted about during our discussion:

1. Do you identify as a caregiver, and what does being a caregiver mean to you? 
2. When did you first have a conversation about Sickle Cell Disease? Was it while you were dating? 
3. What did you know about sickle cell disease before meeting Andressa? 
4. Sometimes, in the SCD community, we don't always get to hear male caregivers' perspectives. How has sickle cell impacted your family dynamic? 
5. How can family members and friends support their children who have sickle cell disease? 
6. What advice would you give couples with blended families to help them support each other as caregivers and parents? 
7. Have you ever had to step in medically and speak on your daughter’s behalf because of inappropriate treatment from hospital staff? If so, how has that experience challenged you personally? 
8. What do you admire most about your spouse and how she cares for your daughter? 
9. What should someone who loves a person with sickle cell know about how to advocate for them? 10. Is there anything else you would like to share

Follow Tamika Smith
Instagram: @andressahunsel
Instagram: @sickle_cell_for_kids
Website: https://andressahunsel.com/

Follow Elle Cole
Instagram: @CleverlyChanging
Website: https://CleverlyChanging.com
Twitter: @CleverlyChangin
Facebook: @CleverlyChanging

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 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. 

About Michelle Berry today's guest

Michelle Berry is the owner of The Healing Center Atlanta and is a Mental Health Therapist.  Michelle believes people can rise above their current situations if surrounded by caring support systems.  She meets people where they are and has helped clients shift from hopelessness to HOPEFULNESS.  Families have discovered a renewed purpose in FAMILY.  Couples have recharged their love and commitment to one another.  Individuals have been EMPOWERED.  Her focus is helping clients BREATHE AGAIN and thus BREATHE more FREELY.  

She has partnered with individuals dealing with addictions, troubled by family disturbances, engaged in troubled relationships, general adult mental health and bereavement.  Also she has worked with clients experiencing domestic violence, domestic abuse or various other traumas.  In addition, she has worked with clients that have been diagnosed with Functional Neurology Disorders (FND).  Michelle has had success with clients suffering with depression and PTSD.  She employs her awareness and love of culture to draw from a holistic health perspective.    Her years of experience is put to good use to assist clients in their HEALING by nurturing the mind, body and spirit, to live out their BEST LIVES.  

Tweetable quote: "I am here for you.  You are not alone on this journey called, HEALING." - Michelle Berry

Finding the right match:

• Psychiatrist - A medical doctor who heals through medicine. (Timestamp 19:20)
• Psychologist - Uses tools to measure your mental health diagnosis and evaluations. (Timestamp 20:03)
• Hospital mental professional, does case management work. Wants the patient to  (Timestamp 20:50)
• A school mental health professional is concerned with how the child is functioning in a social setting with their peers (Timestamp 21:13)
• Family members, couples, and individuals who need help with a deficit in a person's daily lives. (Timestamp 21:30)

Follow our guest, Michelle Berry:

• Website: The Healing Center Atlanta
• LinkedIn: Michelle Berry
• Instagram: @michelle_berry

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. 

Today's conversation on the podcast explores remedies for chronic pain that utilizes medical cannabis. Dr. Lametra Scott, a board-certified pharmacist, and Dr. Susanna Curtis, a sickle cell specialist trained in hematology and oncology, discussed questions the sickle cell community might have regarding pain and cannabis in the management of sickle cell disease.

About Dr. Susanna Curtis
Dr. Susanna Curtis is an Assistant Professor of Medicine at Icahn School of Medicine and an Assistant
Director of the Adult Sickle Cell Program at Mount Sinai Hospital. They received their medical degree
from New York Medical College, completed a residency in internal medicine at Montefiore Medical Center, and fellowship in hematology and oncology at Yale University, where they also completed a Ph.D. in
investigative medicine. Their research focuses on understanding the pathophysiology of chronic pain in
people living with sickle cell disease and using this to develop targeted treatments. They are particularly
interested in examining the utility of cannabinoids for this pain and are currently examining this with
support from the National Heart, Lung, and Blood Institute (NHLBI).

During this episode, you will learn the following tips about cannabis and the management of Sickle Cell Disease the conversation brings up the safety and potential risks that exist:

• Our bodies make phytocannabinoids. (Timestamp 4:19)
• How can patients become certified to use medical cannabis for their chronic pain? (Timestamp 10:56)
• THC seems to have the most impact on pain. (Timestamp 14:20)
• Start low and go slow (Timestamp 15:12)
• Topical applications (Timestamp 15:34)
• THC and children (Timestamp 16:34)
• Dr. Susanna Curtis' THC study (Timestamp 19:06)
• Clinical studies (Timestamp 29:10)
• Talk to your primary care provider about your treatment plan and let him or her know what to try cannabis products (Timestamp 34:14)

Quotable phrase:
When you sign up for a clinical study, you always (at any time) have the right to withdraw. -  Dr. Susanna Curtis 

Follow our guest, Dr. Susanna Curtis:

• Email: susanna.curtis@mssm.edu

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. 

About Tamika Smith
Tamika Smith had a sister who lived with sickle cell disease. She grew up being a caregiver for her sister. Recently, she worked on a dynamic story about sickle cell disease for WAMU 88.5. Multiple outlets shared the feature, such as New treatments are offering hope to sickle cell disease patients, 'My kids are in pain now and need relief now:' how local families cope with sickle cell disease, and How families of color in the D.C. area cope with sickle cell disease. She is also the Weekend Edition host for WAMU. With experience as a host for WAMU and producer for the nationally acclaimed Russ Parr Morning Show, she helped to spearhead and launch Question of the Day with Murray and Tamika, an award-winning interactive trivia game on Amazon Alexa.

During her award-winning career, she has hosted, produced, and reported on a variety of teams, including NPR’s Tell Me More with Michel Martin, Radio One’s Keepin’ It Real with Al Sharpton, WPFW’s Pacifica Radio Network, and TV’s One’s Quiet on the Set with Mary Major. Smith was previously the executive producer for The Big Picture with Olivier Knox, a daily political news program on SiriusXM’s POTUS Channel 124. The non-partisan program offered insight into DC’s most influential voices who help shape the nation’s political landscape. Before that, Smith was a Managing Editor for AOL’s Patch.com.

Smith graduated from Howard University in 2007 with a concentration in broadcast journalism and theater arts.

Shareable quote
There is a lot of education that needs to come around for sickle cell disease. There is a lot of education that needs to happen in the medical community and a lot of myth-busting.

Today's Topic: Making Sickle Cell Disease A Priority With Tamika Smith
Here are the questions we chatted about during our discussion:

1. Why do you think the world needs to learn about Sickle Cell Disease (SCD)?
2. Did you learn anything new about Sickle Cell Disease while you were working on this news story?
3. What impact do you want your NPR story to have on the sickle community and the broader community at large?
4. What type of feedback have you received regarding the feature?
5. Was there anything that didn't make the news cut that you wish the public was aware of?
6. What role do you think the media plays in health care and health equity? 
7. Is there anything else you'd like to share?

Follow Tamika Smith
Instagram: @tamikanews
Website: https://wamu.org/person/tamika_smith/
Twitter: @TamikaNews

Follow Elle Cole
Instagram: @CleverlyChanging
Website: https://CleverlyChanging.com
Twitter: @CleverlyChangin
Facebook: @CleverlyChanging

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 be hearing 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 if you want to learn more about the Sickle Cell Community Consortium. 

About Candis “C~Saint” St. John

Candis “C~Saint” St. John was born and raised in Brooklyn, New York. Born to Grenadian and Jamaican parents, she was exposed to Caribbean poetry and folklore early. Something about poetry always stuck out to her, and it became her favorite genre of literature. Candis started writing poetry at the age of 9. Her gift was quickly recognized and cultivated by her English teachers. Her friends and family also saw her talent and encouraged her to continue writing by providing her with journals to write in and inviting her to speak at special events.

Sickle Cell Warrior

Candis was born with Sickle Cell Anemia. She has endured physical, mental, and emotional pain throughout her life at the hands of this crippling disease and other unfortunate events in her life. Candis has been able to find healing and catharsis through writing poetry. Out of her pain, she has birthed wonderful verbal masterpieces. She writes from a broken place, hoping to touch the lives of those who

may be going through their pain, shining a light into dark places through words rooted in love and truth. Her raw and unadulterated poetry brings attention to some painful issues that desperately need to be discussed but are typically hidden in shame. Candis believes in finding the purpose in your pain and healing through transparency. Not only is she a healer through writing, but also by profession.

Candis is an emergency room nurse but has always cherished the arts. Since the inception of her writing journey, she has published two collections of poetry, My Book of Tears and Dare My Soul to Sing, and a spoken word album, The Mixed Messages Mixtape.

 Social Media Tags:

Facebook, Instagram, and YouTube

•  Mixed Messages Mixtape
• My Book of Tears
• Dare My soul to Sing

Questions answered during today's episode:

1. At what age did you realize that you had sickle cell?

2. How does having sickle cell impact your day-to-day life?

3. How does SCD impact your interpersonal relationships

4. What’s the most challenging part about having sickle cell?

5. How do you cope with having sickle cell?

6. How do you maintain a healthy mental space?

7. How do you find freedom through your art?

8. Has there ever been a time where you lost your will to live due to SCD?

Tweetable quote: "We will never move forward; especially when we talk about traumas, if we don't talk about them." - Candis “C~Saint” St. John

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. 

About Dr. Carolyn Rowley
During this episode, you will learn about nutrition, diet, and the role food can play in the life of a patient with sickle cell disease. Dr. Carolyn Rowley is the Founder and Executive Director of Cayenne Wellness Center and Children’s Foundation (a non-profit organization dedicated to health and wellness). As Executive Director, she specializes in nutrition (well known for her 3-4-4 nutritional program), health psychology, and treating patients and their families with sickle cell disease.  She also began another non-profit organization in 2005 due to her missionary experience in Kenya, East Africa (The Machao Orphanage Foundation).

Dr. Rowley holds a Bachelor’s and Master’s degree in Psychology from Loyola Marymount University, a Ph.D. from Southern Illinois University at Carbondale, and a nutrition certificate from Trinity College. Dr. Rowley has teaching experience from Southern Illinois University at Carbondale (SIU-C), CSU Channel  Islands, and Alliant University, and currently teaches at UCLA Extension. She is a committed environmentalist and vegan and has brought an understanding of the importance of nutrition in dealing with sickle cell disease. She has served as a panel member for several forums for the general public and medical professionals regarding successful living with sickle cell disease.

Tweetable quote: "It's busy people that get things done!" - Dr. Carolyn Rowley

During this episode, Dr. Rowley talked about food nutrition and how it heals. Dr. Rowley and Dr. Marjorie shared their personal experiences using food for healing.

A foundation of what we need to be healthy (Timestamp 21:20)

• Breath
• Water/Hydration
• Music
• Food

3-4-4 Breakfast, Lunch, and Dinner (Timestamp 22:05)
3 Fresh fruit, dried fruit, and grain
4 Seasonal and local fruits (fresh fruit, green vegetables, orange vegetables, protein, and grain)
4 Seasonal and local vegetables (fresh fruit, green vegetables, orange vegetables, protein, and grain)

(The vegetables and fruits should be seasonal and local)

Follow our guest, Dr. Carolyn Rowley:

• Website: https://CayenneWellness.com
• Instagram @CayenneWellness
• Facebook: https://facebook.com/CayenneWellness

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 Creative Elixir with Mia Robinson. 

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. 

The conversation on the Podcast today explores THC and cannabis. Dr. Lametra Scott and Dr. Swathi Varanasi, an integrative health pharmacist and entrepreneur discuss Puff, Puff or Pass: The role of cannabis in the management of sickle cell disease.

Dr. Swathi Varanasi, or Dr. Swathi, is an integrative health pharmacist and entrepreneur. She is a plant-based wellness specialist; a medical expert and advisory board member for CBD, adaptogen, and food brands; a published author; a peer-reviewed clinical researcher; and a multimedia content contributor for print/online publications.

As a healthcare disrupter, she looks for opportunities to break barriers and challenge her western-trained colleagues to think beyond the conventional scope of their practice. Through the many modalities of integrative medicine and patient-centered shared decision-making, she believes that health and wellness is achievable for everyone. Emphasizing an evidence-based approach, Dr. Swathi is passionate about educating practitioners, students, patients, and consumers, and strives to empower everyone to be the best, most authentic version of themselves.

Dr. Swathi co-founded and is Chief Scientific Officer of Element Apothec, an innovative CBD botanical wellness brand dedicated to evidence-based education and formulations for everyone. She studied at the Medical University of South Carolina (Charleston, SC), Cornell University T. Colin Campbell Center of Nutrition Studies (Ithaca, NY), and Carleton College (Northfield, MN). Dr. Swathi serves as Director of Science of the largest statewide cannabis patient advocacy non-profit organization, LA NORML, and as distinguished adjunct faculty and speaker at colleges of pharmacy, colleges of Traditional Chinese Medicine, and undergraduate institutions, and at conferences, respectively. In her free time, she can be found planning her next trip (30 countries and counting!).

During this episode you will learn the following answers and tips about cannabis and the management of Sickle Cell Disease:

• What is cannabis?
• What is THC?
• Broad Testing technically means no THC
• Certificate of Analysis (COA) testing transparency should be easily visible on the companies website. It's also one of the ways to vet the company that you're buying from. 
• It is essential to know who you're buying from before you make your first purchase.

Follow our guest Dr. Swathi Varanasi:

• Website: https://elementapothec.com
• Instagram @elementapothec & @DrSwathi
• Facebook ElementApothec

Follow our guest 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 Creative Elixir with Mia Robinson. 

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. 

During this episode, I spoke with Francine Baker, a wife, mother, caregiver, and student. In episode 12, Francine spoke with me transparently about the highs and lows of parenting a child with sickle cell disease. Francine has two children who are living with sickle cell disease. Her son and daughter are now young adults who have gone through the transition process.

Transition is when pediatric patients move from pediatric care to adult care. Sometimes this change means the patient receives new doctors and a unique team of healthcare professionals. Francine helps moms and dads understand that the role of a parent is not just to be a caregiver, but they should also be an advocate, supporter, listener, and at times healthcare coordinator. She also spoke about the shift students who enter college must take when they are away at school and have to learn a new team. Sometimes getting the college and home healthcare team to communicate with each other can be challenging, but Mrs. Baker shared what works well for her and her daughter to make it a seamless process.

If you have additional questions about this episode, please let us know so we can answer your questions.

We want you to stay connected with the sickle cell community and the VitaminSC3 podcast, so please visit our VitaminSC3 Instagram page. Send us a direct message and let us know what you think about the Podcast.

Follow Elle Cole
Instagram: @CleverlyChanging
Website: https://CleverlyChanging.com
Twitter: @CleverlyChangin
Facebook: @CleverlyChanging

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 Essential RX segment with Dr. Lametra Scott. 

Do you want to become a Sickle Cell Community 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. 

Mia's creative guest today is LaShaunta McAllister.

LaShaunta McAllister is a wife, mom, and Sickle Cell Warrior. Born in Albany Ga and raised in Dekalb County Lithonia, Ga, she is the middle child of three. Throughout her life, LaShaunta thought she had Sickle Cell Hb SS, but recently, doctors informed her that she has Hb Beta Thalassemia.

Mrs. McAllister is a mother of three children. Her son JeShaun is nine years old. Her princess Jalee'ah is eight years old, and her baby daughter Iyana is three years old. Each child has the Sickle Trait. Jalee'ah has Sickle Cell Trait Alpha Thalassemia, also known as Bart's Disease. Growing up, Mrs. McAllister didn't have an active social life, nor was she close to her family. So she experienced a lot of her sickle cell complications alone. After becoming a mother, her children became the light of her life. Crafting has always been her favorite pastime to escape to.

Today's episode is about creativity and making things by hand, such as jewelry, wood-working, creating a doll house, and more. To view pictures of some of  LaShaunta McAllister's artwork, please visit our VitaminSC3 instagram page.

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 Community 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. 

Kayla Gorrell is a Certified Health Coach, 500 hr certified yoga teacher, cycle teacher, author, smoothie expert, and public speaker focused on empowering active people to improve their health and happiness through optimal nutrition, fitness, and mindfulness. She believes in helping her clients create and sustain long-term behaviors that ultimately impact their lifestyles.

During her teens and early twenties, she struggled to find a lifestyle that would result in her ideal weight, give her energy and be satisfying and easy to follow. Since 2006 she has done extensive research and educated herself on nutrition. She discovered and experienced firsthand that the Standard American Diet (SAD) is making us sick because it consists of pseudo foods made with artificial ingredients and preservatives. These foods are also heavily processed. When we get sick, we rely too much on medications that only treat symptoms and not the root causes of the problems.

 She now eats a whole food plant-based diet with limited gluten. She can now more easily maintain a healthy weight without obsessing over calories and grams, and she has ample energy for her busy and active lifestyle. Her hair and skin are healthy; most importantly, she feels whole and happy.

Family and friends often approach her for nutritional advice because she walks the talk and radiates health and happiness. Now that she has lived this journey, she has an unrelenting passion for helping others find their healthy, whole, and happy path, which includes eating real whole foods, moving mindfully, and removing as many toxins as possible from her everyday life.

Check out her book: More Plants Please.

Some of the highlights from today's episode are:

Kayla is a health coach, yoga instructor, smoothie queen, and more so she and Dr. Majorie Brewer spoke about many different topics such as running, cycling, spinning, yoga, and healthy habits.

• Balance is a huge part of yoga. Remember strength, flexibility, and balance! Timestamp 21:28

• Logs can teach us how to deal with unpleasant things that come up. Timestamp 24:26

• Talk to your doctor when you start a new exercise routine or diet. Then take time to figure out what is going to work for you and your body. Timestamp 34:00

• What is the most important component of a yoga practice? Consistency Timestamp 35:00

• Forcing intensity when you're not ready is doing yoga wrong. Timestamp 39:05

• How can people get started doing yoga? Timestamp 39:18

1. Read up on the style of yoga.
2. Call before you go so you what what to expect.
3. If you don't have a mat you can rent one or borrow one. 

Tweetable quote: "Healthcare has to be a dialog, it has to be ownership by the treating team." - Ted Kieffer

Follow our guest Kayla Gorrell:

• Website: HealthyWholeHappy.com
• Instagram @KaylaGorrellHealthCoach
• Facebook Kayla Gorrell

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 Creative Elixir with Mia Robinson. 

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. 

Dr. Ted Kieffer is an American Board of Pathology certified Clinical Pathologist and Transfusion Medicine specialist with specialized training in Clinical Microbiology. He received his medical school, residency, and fellowship training at Indiana University and Indiana University Hospitals pathology program. Dr.Kieffer has worked in medical reimbursement as a senior Healthcare consultant, an associate professor and medical director with West Virginia University and hospital systems, and Cell and Gene Therapy Medical director with a local Tennessee non-profit blood center. He is engaged in several national and international societies and currently sits on the BSR/PDA apheresis collection for cell and gene therapy products standards committee, the intenational society for cell and gene therapy's laboratory professionals committee, and was recently offered the appointment to the TN state Board of Medical Laborator as a Pathologist representative. 

When Where There Be a Universal Cure to Sickle Cell Disease?

Today's episode is about gene therapy, stem cells, and bone marrow transplants. Today's show will provide a basic framework of sickle cell and gene therapy and how they differ from a bone marrow transplant. 

Today's Topic: Is a Universal Cure to Sickle Cell Disease on the Horizon?

• Dr. Kieffer explains what happens during a bone marrow transplant and how it is different than gene therapy on a pathologic level: Timestamp 06:38

• Explain the term Myeloablative. Timestamp 10:27

Myeloablative HSCT is the more stringent type of treatment. HSCT destroys the body's (autoreactive) lymphocytes and the bone marrow (source).

• Where are we in curative therapies, and how are they different from the bone marrow transplant process? Timestamp 13:43

• Gene editing vs. LentiGlobin Gene Therapy. Timestamp 21:12

• Curative Therapies are usually only offered to sickle cell patients in dire conditions. Why isn't it provided to more patients sooner? Timestamp 27:00

Tweet able quote: "Healthcare has to be a dialog, it has to be ownership by the treating team." - Ted Kieffer

Follow Dr. Ted Kieffer:

You are more than welcome to connect with Dr. Ted Kieffer to learn more about his research within the sickle cell community

• Email KiefferT0922@gmail.com
• Twitter @Dr_ConneCTed
• Instagram @drconnected

Follow our guest 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 Self-care is Healthcare with Dr. Marjorie 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. 

About Aniekan Uwan
Aniekan is the Co-founder and CFO of Sickle Cell Medical Advocacy Inc. He is the husband of Simone Uwan, MD. Aniekan has a background in Project Management. His professional skills were honed while working at Google as a Senior Project Specialist overseeing international projects. His Accounting skills were also a welcomed asset. He has exceptional relationship-building skills and is a keen problem solver. Today, Aniekan spoke to us on the VitaminSC3 Podcast about the love of his life, Dr. Simone, and how he cares for her.

Tweetable quote
Be willing to stand up for your partner . . . learn to protect. - Aniekan Uwan

Today's Topic: Supporting a Spouse Who Lives With Sickle Cell Disease
Here are the questions we chatted about during our discussion:

1. How did you and your spouse meet?
2. When did you learn that she was a Sickle Cell Warrior?
3. What did you know about sickle cell disease prior to meeting your spouse?
4. Sometimes in the SCD community, we don't always get to hear male caregivers' perspectives. When did you begin to accept and acknowledge that you were a caregiver for your wife? 
5. How can married couples strengthen their relationship when one is living with a chronic illness?
6. What does unconditional support look like for you?
7. What advice would you give young couples who are looking to get married, but this experience is completely new for them?
8. Have you ever had to step in medically and speak on your wife's behalf? If so, how has that experience challenged you personally?
9. What do you admire most about your spouse?
10. What should someone who loves a person with sickle cell know about how to advocate for them

Follow Aniekan and His Wife, Dr. Simone Uwan
Facebook: sicklecellmedicaladvocacy
Instagram: doctorsimonesays
Website: sicklecellmedicaladvocacy.org

Follow Elle Cole
Instagram: @CleverlyChanging
Website: https://CleverlyChanging.com
Twitter: @CleverlyChangin
Facebook: @CleverlyChanging

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 be hearing 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 if you want to learn more about the Sickle Cell Community Consortium. 

The Sickle Cell Community Consortium powers the Vitamin SC3 podcast. This new broadcast features different weekly themes for the sickle cell community, their families, supporters, healthcare workers, and allies. Each week, episodes of the Vitamin SC3 Podcast will air with a different theme in mind.

Today's show is hosted by Dr. Marjorie Brewer who spoke to us about mental health on her segment Self-care is Healthcare.

Dr. Brewer's guest today is Ayoola Ogunyimika also known as Her Silence. Ayoola is a self titled artist, poet, writer, and extraordinary creative, She loves using her artistic abilities to express herself. Ayoola chose “Her Silence” as her poet name because she speaks from a place of solitude. Her Silence is a poet born from the trauma of complacency. Her Silence no longer allows the wavering doubt that has filled her head to stop her from speaking words of love, demise, acceptance, and control through poetic catharsis.

Ayoola's experience as a Nigerian first-daughter fuels her art, which has been instrumental in her growth as a creative. Àdùkẹ́ Adé or AA are her art tags which bares the same name as her art business. Àdùkẹ́ means a daughter we love to cherish/pamper, and Adé relates to royalty/the crown. Her goal is to find creative autonomy in her holistic mediums as an Art Therapist with a speciality in Narrative Medicine.

Dr. Brewer and Ayoola touched on some important topics such as:

• Going on a self-healing and self-care journey as a young adult in college (Timestamp 7:23)
• How has accessing your voice can have a positive impact on you as a person? (Timestamp 21:00)
• Learning how ask questions and speak up for yourself. Sometimes doctors are only looking at your lab work so sometimes you will have to educate them. (Timestamp 22:00)
• Learn to be responsible for yourself and honor yourself during hospital stays (Timestamp 26:15)
• Building community with hospital staff (Timestamp 28:00)

From Her Silence
I hide all my prose in my gap

Griot like my two front teeth

All my pain lays dormant beneath my tongue

For that I am grateful my stories keep a song in my mouth   

You know me by my vulnerability, admire me for my strength, why shall I fear this blood I did not choose, why would I gift myself shame I did not inherit. My relationship with my body is and has been very dysphoric. I have HbSC and my body has survived many hurricanes and tsunamis and the shifts of the earth beneath my feet. Because this genetic blood disorder causes me almost daily pains and more frequent medical crises, I’ve learned how to grow and nurture a relationship with my body. I remember almost every Sickle Cell crisis I’ve ever had in detail. I think there’s this grieving process we don’t allow ourselves when living with our bodies. When I became intentional with mine everything changed, and that alone is scary. The thing about chronic illness is, it’s on a timeline that forces you to change your daily routine and relearn your body. Something about the process of recovering from the hospital is so empty and lonely. You have to relearn how to feel at home and safe in your body along with allowing yourself grace. Now how do you do that? Having a level of respect for yourself that you didn’t before, to begin, and admiring your ability to get things done alone while being carried on the back of your community. Community support is so important to me because I am a pouring faucet, more times than not I have to stop the flooding and allow others to pour into me as well. When my community herds around me, I am protected, abundant, and grateful. I am a vase, passionate about the emotional, mental, & physical healing work for black individuals living with Sickle Cell. I create to survive, to allow my bones some catharsis; I fell inlove with the need to express my creative mind at a young age. I thank that little black girl for the warrior spirit she had to keep going and harness the healing vitality of movement through prayer, poetry, art, dance, sound, and love.  

Her Silence is a published poet that was born from the trauma of complacency. I chose Her Silence as my poet’s name because she speaks from a place of solitude. I am a prolific artist, poet, singer, writer, and overall creative who centers healing and Sickle Cell advocacy within my differing creative mediums. My experiences as a Nigerian first-daughter fuel my art, which has been instrumental to my growth as a creative. Àdùkẹ́ Adé or AA are my art tags which bares the same name as my art business. Àdùkẹ́ means a daughter we love to cherish/pamper, and Adé relates to royalty/the crown. My goal is to find creative autonomy in my holistic mediums as an Art Therapist with a speciality in Narrative Medicine.

Follow Ayoola's journey and artwork:
Her Silence is on Instagram @artby_ayo

The next episode of the Vitamin SC3 Podcast drops next Monday

Please tune in next week for a new episode we will be hearing part 2 of the Self-care is Healthcare segment with Dr. Brewer and Ayoola. 

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 if you want to learn more about the Sickle Cell Community Consortium. 

Today's show is hosted by Dr. Marjorie Brewer who spoke to us about mental health on her segment Self-care is Healthcare.

Dr. Brewer's guest today is Ayoola Ogunyimika also known as Her Silence. Ayoola is a self titled artist, poet, writer, and extraordinary creative, She loves using her artistic abilities to express herself. Ayoola chose “Her Silence” as her poet name because she speaks from a place of solitude. Her Silence is a poet born from the trauma of complacency. Her Silence no longer allows the wavering doubt that has filled her head to stop her from speaking words of love, demise, acceptance, and control through poetic catharsis.

Ayoola's experience as a Nigerian first-daughter fuels her art, which has been instrumental in her growth as a creative. Àdùkẹ́ Adé or AA are her art tags which bares the same name as her art business. Àdùkẹ́ means a daughter we love to cherish/pamper, and Adé relates to royalty/the crown. Her goal is to find creative autonomy in her holistic mediums as an Art Therapist with a speciality in Narrative Medicine.

Dr. Brewer and Ayoola touched on some important topics such as:

• Going on a self-healing and self-care journey as a young adult in college (Timestamp 7:23)
• How has accessing your voice can have a positive impact on you as a person? (Timestamp 21:00)
• Learning how ask questions and speak up for yourself. Sometimes doctors are only looking at your lab work so sometimes you will have to educate them. (Timestamp 22:00)
• Learn to be responsible for yourself and honor yourself during hospital stays (Timestamp 26:15)
• Building community with hospital staff (Timestamp 28:00)

From Her Silence
I hide all my prose in my gap

Griot like my two front teeth

All my pain lays dormant beneath my tongue

For that I am grateful my stories keep a song in my mouth   

You know me by my vulnerability, admire me for my strength, why shall I fear this blood I did not choose, why would I gift myself shame I did not inherit. My relationship with my body is and has been very dysphoric. I have HbSC and my body has survived many hurricanes and tsunamis and the shifts of the earth beneath my feet. Because this genetic blood disorder causes me almost daily pains and more frequent medical crises, I’ve learned how to grow and nurture a relationship with my body. I remember almost every Sickle Cell crisis I’ve ever had in detail. I think there’s this grieving process we don’t allow ourselves when living with our bodies. When I became intentional with mine everything changed, and that alone is scary. The thing about chronic illness is, it’s on a timeline that forces you to change your daily routine and relearn your body. Something about the process of recovering from the hospital is so empty and lonely. You have to relearn how to feel at home and safe in your body along with allowing yourself grace. Now how do you do that? Having a level of respect for yourself that you didn’t before, to begin, and admiring your ability to get things done alone while being carried on the back of your community. Community support is so important to me because I am a pouring faucet, more times than not I have to stop the flooding and allow others to pour into me as well. When my community herds around me, I am protected, abundant, and grateful. I am a vase, passionate about the emotional, mental, & physical healing work for black individuals living with Sickle Cell. I create to survive, to allow my bones some catharsis; I fell inlove with the need to express my creative mind at a young age. I thank that little black girl for the warrior spirit she had to keep going and harness the healing vitality of movement through prayer, poetry, art, dance, sound, and love.  

Her Silence is a published poet that was born from the trauma of complacency. I chose Her Silence as my poet’s name because she speaks from a place of solitude. I am a prolific artist, poet, singer, writer, and overall creative who centers healing and Sickle Cell advocacy within my differing creative mediums. My experiences as a Nigerian first-daughter fuel my art, which has been instrumental to my growth as a creative. Àdùkẹ́ Adé or AA are my art tags which bares the same name as my art business. Àdùkẹ́ means a daughter we love to cherish/pamper, and Adé relates to royalty/the crown. My goal is to find creative autonomy in my holistic mediums as an Art Therapist with a speciality in Narrative Medicine.

Follow Ayoola's journey and artwork:
Her Silence is on Instagram @artby_ayo

The next episode of the Vitamin SC3 Podcast drops next Monday

Please tune in next week for a new episode we will be hearing part 2 of the Self-care is Healthcare segment with Dr. Brewer and Ayoola. 

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 if you want to learn more about the Sickle Cell Community Consortium. 

Her guest today is Dr. Edward Botchway. He is an Associate Professor in the Wallace H. Coulter Department of Biomedical Engineering at the Georgia Institute of Technology and Emory University. Dr. Botchwey’s research program combines biomaterials science, metabolomics, and immunology to develop new therapeutic approaches that enhance the body’s innate ability to regenerate tissues damaged by injury and disease. This innovative program has resulted in new platform technologies to modulate local bioactive lipid metabolism to enhance growth and maturation of new blood vessels, to increase recruitment of endogenous pro-regenerative inflammatory cells, and to improve regenerative capacity in various adult injury contexts, including segmental bone loss, volumetric muscle loss, excisional skin injuries, and physical damage to oral mucosa. His lipidomic profiling platforms also inform methods to assess the therapeutic quality and potency of cell-based treatments and provide insight into the complex pathophysiology of sickle cell disease (SCD). He has received several distinctions, including the Presidential Early Career Award for Scientists and Engineers (PECASE) from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and SFB Mid-Career Award. He is also an elected Fellow of the American Institute for Medical and Biological Engineering, and currently serves as chair of the SFB Diversity, Equity, & Inclusion (DEI) committee (source).

Osteonecrosis is Bone Pain

Today's episode is all about bone pain and Sickle Cell Disease. When we discuss bone pain, we are mainly talking about osteonecrosis. According the definition provided by the Mayo Clinic, osteonecrosis also known as avascular necrosis (AVN) is the death of bone tissue due to a lack of blood supply. it can lead to tiny breaks in the bone and cause the bone to collapse. The process usually takes months to years.

Today's Topic: Bone Pain and Sickle Cell Disease

Dr. Botchwey discussed the following points about bone pain and sickle cell disease:

Is there a difference in what men may experience than what women experience. Timestamp 11:56

AVN can start in some sickle cell patients as early as 15 years old.  Why does it happen so quickly? Timestamp 17:00

Implant Infection. Timestamp 21:55

Treatments for osteonecrosis Timestamp  28:56

Follow Dr. Botchwey's Research on Bone Pain and Sickle Cell Disease

You are more than welcome to connect with Dr. Edward Botchwey to learn more about his research within the sickle cell community

• LinkedIn Edward Botchway
• Twitter @BotchwayLab

Follow our guest 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. 

The Caring is Giving segment focuses on the stories of caregivers whose loved ones are living with sickle cell disease. I spoke with special guest, Diane, the grandmother of Genesis, a bone marrow transplant recipient. Diane is both a teacher and sickle cell caregiver.

Diane spoke about Caregiving for Genesis a Sickle Cell and a Bone Marrow Transplant recipient:

This episode shares information about children diagnosed in utero with sickle cell disease. Genesis's mother learned she would have sickle cell disease after receiving amniocentesis testing. It is believed that for the first six months of a child's life, children with sickle cell disease still have prevalent fetal hemoglobin (hemoglobin F, HbF) from their mothers. Diane, the grandmother of Genesis shared with us the earlier experiences that she had while caring for her granddaughter.

The American Red Cross recorded that children with sickle cell disease are at risk of receiving a stroke. Diane spoke to us about her granddaughter's experience suffering from a silent stroke.  

Diane advises parents to teach their children how to communicate what is going on with their health, so they can tell the doctors and healthcare workers how they feel themselves. She mentioned that this may help the child gain more respect early on in their lives as they communicate with health care professionals.

During the conversation Diane speaks about about pediatric patients and depression, If you are curious about the correlation, please read this article: Screening for Depression in Adolescents with Sickle Cell Disease.

If this episode intrigued you to learn more about the clinical trials available for sickle cell patients, you should visit ClinicalTrials.gov. Also check out the trials that are being done at the National Institute of Health.

Connect with Diane's granddaughter Genesis at:

Genesis' Be the Match Blog

Cure4Genesis

Facebook @GoldenGlint

Instagram @GenesisSCD_Warrior

New Book "Rebirth: A Sickle Cell Warrior's Crossover (Warrior's Sickle Cell Poetry Collection Book 1)"

Website: www.goldenandglint.com

Follow Elle Cole
Instagram: @CleverlyChanging
Website: https://CleverlyChanging.com
Twitter: @CleverlyChangin
Facebook: @CleverlyChanging

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 be hearing 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 if you want to learn more about the Sickle Cell Community Consortium. 

1. The Creative Elixir with Mia Robinson 

2. Caring is Giving, hosted by Elle Cole

3. Essential RX hosted by Dr. Lametra Scott

4. Self-care is Healthcare hosted by Dr. Marjorie Brewer

The Creative Elixir is our creative and social hour hosted by Mia Robinson. Today she welcomed a special guest, Shaquansia Love the creator and owner of Angelic Faces. Angelic Faces is a Licensed Esthetician/Professional Makeup artist. She travels nationwide helping people create the look that they want to achieve.

Connect with Shaquansia on
Instagram @angelicfacesbymrs.love
Facebook @angelicfacesbymrs.love
Website: Angelicfaces2014

About Sickle Cell Warrior Shaquansia Love
Shaquansia Love is an ambitious and talented up and coming make-up artist from Pensacola, FL.  She is the wife of Steven Love, and the mother of two beautiful daughters, Shaniylah and Starria. 

​

Shaquansia stumbled upon her gift of make-up artistry in May of 2014 when she completed an application for a family member that was attending her prom.  Shaquansia received many compliments and she was encouraged to continue in her pursuit.  During her research of the art, she discovered that she was very passionate about this field, and wanted to pursue professionally. 

Shaquansia has graduated to become an Esthetician and Licensed in May of 2015.  Along with Angelic Faces, Shaquansia is also the founder of Blessed Miracles Foundation which raises awareness about Sickle Cell as she is also a Sickle Cell Warrior.  She is excited about her future and encourgages you to follow her along this journey.  Book your session now and be transformed into an ANGELIC FACE!

The next episode of the Vitamin SC3 Podcast drops on Monday
Please tune in next week for Episode 4. We will hear from Aniekan Uwan during our Caring is Giving segment.

Do you Want to Become a Sickle Cell Consortium Partner?
If you want to learn more about the Sickle Cell Community Consortium follow their Instagram and Facebook pages. 

1. The Creative Elixir with Mia Robinson 

2. Caring is Giving, hosted by Elle Cole

3. Essential RX hosted by Dr. Lametra Scott

4. Self-care is Healthcare hosted by Dr. Marjorie Brewer

During this introductory episode, we spoke to our new mental health segment host, Dr. Marjorie Dejoie Brewer. You'll get an opportunity to meet Dr. Brewer, hear what fuels her passions, and learn what to expect from her new segment "Self-care is Healthcare" which focuses on mental health awareness for sickle cell patients and their families.

About Dr. Marjorie Dejoie Brewer our Self-care is Healthcare segment host
Marjorie DeJoie-Brewer, MD, is a medical director of the Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter. She is also a research liaison for hydroxyurea education at the Children’s Hospital of Philadelphia. Dr. DeJoie-Brewer found out that she had SCD as a second-year medical student at the University of Pennsylvania. In service to the SCD cause, Dr. DeJoie-Brewer is the medical director for her local SCD association, research clinician at Children’s Hospital, and owner of her own private wellness practice.

Please tune in next week for Episode 3. Mia Robinson will host our Creative Elixir segment.

Become a Sickle Cell Consortium Partner
If you want to learn more about the Sickle Cell Community Consortium follow their Instagram and Facebook pages. 

1. The Creative Elixir with Mia Robinson 

2. Caring is Giving, hosted by Elle Cole

3. Essential RX hosted by Dr. Lametra Scott

4. Self-care is Healthcare hosted by Dr. Marjorie Brewer

Each show will give you more insights into sickle cell warriors' real lives and their families. You will learn why we are bonded by blood with shared life experiences.

The Creative Elixir with Mia Robinson 

Mia is a sickle cell warrior and a professional patient advocate. She is also the co-founder of Sickle Cell Awareness 365. Mia's conversations will celebrate creativity and fun in the sickle cell community.

Caring is Giving, hosted by Elle Cole

Elle Cole empowers moms and advocates for children with sickle cell disease through her media company, Cleverly Changing LLC. She is a mom of twin daughters, one of whom is living with Sickle Cell Disease and Type 1 Diabetes. In 2020 she was awarded the Advocating for Another WEGO Health award. She is the author of A Sickle Cell Coloring Book for Kids, ABCs of Sickle Cell, and The Ultimate Sickle Cell Activity Book. She is a writer, speaker, and Podcast Producer.

Essential RX hosted by Dr. Lametra Scott

Dr. Lametra Scott is the Founder and Executive Director of the Breaking the Sickle Cell Cycle Foundation, Incexternal icon. She started the foundation in 2015 to provide community support and to educate her peers and providers. She is also a pharmacist with the State of Tennessee.

In the next episode, you will learn more about the fourth segment of the Vitamin SC3 Podcast, Self-care is Healthcare, hosted by Dr. Marjorie 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.