Trusted Resources: Community Center

My daughter started school last year prior she had been homeschooled. She was in the 7th grade. She attends a private school, but I had to meet with all of her teachers and her principal. I gave the school a copy of her health history form that was required, and I have them a copy of Sickle Cell and School: A Guide to School Policy and Best Practices Covid Edition. The booklet is from the Sickle Cell Community Consortium. In the back of the book is a Health Plan Template that I completed on my daughter’s behalf. The plan includes a picture of her, her grade, gender, condition, date of plan, review date, parent/guardian contacts, emergency contact, campus key person, primary care physician, and the steps to take regarding prevention. It also includes medication, pain management, and stakeholders regarding the individual health plan (school nurse, teacher/administrator, sickle cell nurse/social worker, and school staff that have a copy of the plan).  

A genetic disease mostly affecting those of African descent, sickle cell produces debilitating pain and a life sometimes cut short, especially for the undiagnosed. And as a burden largely borne by the underprivileged, sickle cell is not just a medical problem, but a social one. Chasing the Crescent Moon explores the challenges posed by sickle cell through the story of one physician and the lives he has touched. Dr. Kwaku Ohene-Frempong grew from a child of Ghanaian cocoa farmers to become a Yale scholar, an Olympic athlete, and one of the most important international warriors against sickle cell. He also bore a son who suffers from the disease. In his greatest accomplishment, Dr. Frempong established the only city-wide newborn screening for sickle cell in all of West Africa, where 1 in 50 babies suffers from the illness.  

June 19th is World Sickle Cell Day. We sat down with Andrea Matthews, a parent of a child with sickle cell disease to share her family’s journey with this disease. If you’re unfamiliar with sickle cell disease (SCD), you may be surprised to learn that over 275,000 individuals a year are diagnosed with the condition in the world. SCD is an inherited blood disorder in which the body doesn’t produce enough healthy red blood cells to carry adequate oxygen throughout the body. The condition causes anemia, episodes of pain, swelling of the hands and feet, frequent infections, delayed growth, and vision problems. It has been estimated that approximately 100,000 people in the United States are affected by SCD.

When you first meet my 5-year-old daughter Gia, you might notice how smart she is. She loves drawing, reading, and collecting toys. She enjoys watching Paw Patrol and My Little Pony and spending time with her big sister. But after spending some time with her you might also notice that she pays much more attention to drinking enough water and eating healthy foods than the average child. She is extremely aware of when her body needs to rest and has learned at a young age how to advocate for herself in hospitals and doctors’ offices. My daughter is a sickle cell warrior and one of the strongest people I know.

As a mother, I know that I have a responsibility to vote on Election Day for many reasons, and when I walk in that booth to cast my ballot, I will be thinking of not only my own children but other kids and their parents all across the country who deserve access to quality, affordable health care. As a parent, my main responsibility is the health and safety of my daughter, Chase, and my son, Chance. I’m sure parents everywhere can relate to that. As nurturers and providers, we embrace our role to protect our loved ones but we also need to make sure that our laws and elected officials reflect our priorities and our values. And as I personally continue to battle sickle cell disease, it is very clear that my own health is very much tied to me being able to take care of my children. That’s really what the health care fight and this election is all about—the well-being of our families.

Adrienne Shapiro is a patient advocate, co-founder of the Axis Advocacy SCD. Like the three previous generations of mothers in her family, Shapiro gave birth to a child born with sickle cell disease. Yet the news came as a complete surprise - not because she was unaware of her family history, but because she had received a false negative result from her sickle cell disease/trait test. It wasn’t until her daughter Marissa was six months old, and her family got word of her diagnosis in a letter from the California New Born Screening Program, that she knew. “It was shocking to receive the diagnosis in the mail. We did not believe it at first.” The confirmation marked a turning point in Shapiro’s life. She now had a single goal – keeping her daughter Marissa alive until science found a cure. She became a patient advocate and co-founded the Axis Advocacy SCD patient education and support website.

It has been quite a year for Ayòbámi Adébáyò. She is in London for International Women’s Day, as she was last year, when it was announced that her first novel had been longlisted for the Baileys prize. Stay With Me went on to make the shortlist and is now up for the Wellcome prize, the winner of which will be announced later this month. The novel was glowingly reviewed, not least by the New York Times’s high priestess Michiko Kakutani (“stunning”, “powerfully magnetic and heartbreaking”); Sarah Jessica Parker chose it for the American Library’s book club; and the author, who has just turned 30, has been interviewed in both the Paris Review and Vogue.When we meet, she has come from the BBC, where she had been discussing the #MeToo movement in Nigeria. “It’s complex and very different across regions, across class, maybe even across religions,” Adébáyò says, describing what it means to be a young woman in her home country.

In this episode Dr. Scott and Dr. Botchwey discuss bone pain and Sickle Cell Disease. The conversation mainly centered around understanding how osteonecrosis occurs and how researches are learning that more treatment options exist. Today's show is brought to you by the Essential RX segment with Dr. Lametra Scott. 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.  

The VitaminSC3 Podcast is powered by the Sickle Cell Community Consortium. Today's show is brought to you by the Caring is Giving segment with Elle Cole. Today's conversation touches on marriage, unconditional support, loving someone with a chronic illness, and relocation. 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.  

On this episode, Dr. Z and Dr. C debut a series about the “Legends of Sickle Cell”. They interview Dr. Michael DeBaun and patient legend Shamonica Wiggins. Cheat Codes is a podcast for the sickle cell community that brings listeners a series of segments and interviews packed with critical education that patients and families need to know, as well as updates and clarifications from the social media "buzz" around sickle cell. Hosted by Ahmar U. Zaidi, MD (Dr. Z) & Michael U Callaghan, MD (Dr. Mike).

In this installment, The Hematologist Editor-in-Chief Dr. Laura Michaelis has a conversation with Dr. Ifeyinwa (Ify) Osunkwo of The Levine Cancer Institute/Atrium Health. They discuss unique issues facing the sickle cell disease population during the COVID-19 public health crisis as well as some benefits of using telemedicine and telementoring.  

Whether we like it or not, sex is important in a relationship. If you are not sexually attracted to the person you are in a relationship with then there is a problem. So we decided to dig into the sexual life of sickle Cell warriors. I had Greg Emuze and Adedayo over on Crux of the Matter last Friday on Happenings Radio and I must thank them for being very open. The show was very enlightening. “Sex is not risky. It is fun.” Says Adedayo while Greg says “Sex is a form of exercise and you must be hydrated.” They were open enough to let us know when they had their first sexual experience, how their sex life is and what they do to prepare themselves and avoid having a crisis during sex or immediately after sex.

Excerpts from our conversation with Dr. Allison King, an NIH-funded sickle cell specialist at Washington University in St. Louis. NIHNiH: People with sickle cell disease - even children - have a higher than normal risk of stroke. What other challenges can sickle cell disease pose to the developing brain? King: Both overt and silent strokes can harm the brain. But we’ve also realized that there are some children who haven’t had a stroke who also have a lot of trouble in school. Now we know that things like lower oxygen levels in the blood can also be associated with cognitive challenges. It’s also very stressful on the central nervous system to be chronically anemic. Plus, the inflammation from the disease can be a challenge to the brain as well.

Dr. Freda Lewis-Hall, chief medical officer of Pfizer, appears on The Doctors to speak about sickle cell disease, a blood disorder that primarily affects African Americans, and the genetic trait linked to the disease. She and The Doctors are joined by Tionne "T-Boz" Watkins, of the musical group TLC, who lives with the condition. Check your local listings to see the whole show and learn more at www.GetHealthyStayHealthy.com.

Keith Wailoo, Professor of history and public affairs at Princeton University’s Woodrow Wilson School of Public and International Affairs is interviewed by Stephen Morrissey, Managing Editor at New England Journal of Medicine on Sickle cell disease. Professer Wailoo has written a perspective article about the advances in understanding and treating sickle cell disease and about the challenges that remain. The history of sickle cell disease has been marked by controversies over therapy prevention and funding. Despite recent developments in treating pain crisis and gene therapy, many patients still struggle to have their symptoms recognized and adequately addressed. Professor Wailoo says, “For most of the 20th century, sickle cell disease was an invisible disease. Precisely, because it was so hard to clinically recognize, clinical recognition being crucial to actually addressing it. After all, here is a disease that caused early infant mortality in a time period when infant mortality and infectious disease mortality prevailed.”

For the month of July, we are bringing awareness to sickle cell trait. Abibat Oshiobugie Suleiman is the host for today's episode. Abi talks with special guests Abisola and Seyi Shof, also known as “the Shofs” on social media, about their involvement in the sickle cell community, their love story with SCT, the challenges they had to face with telling their families, and weighing the options for marriage and children that led them to their IVF journey with PGD testing.  

Marie Ojiambo first came into the limelight when she was crowned Miss Kenya USA 2013 and the People’s Princess Miss Africa USA 2013. She entered the pageant because she saw this as an opportunity to bridge the gap in knowledge and understanding of sickle cell disease. She has gone ahead to do exactly that. Q: Tell us more about your background, Marie. A: I am 27 years old and the second born in a family of four children. I am the daughter of a single mother. I was born and raised in Nairobi- went to Loreto Convent Valley road, from where I moved onto pursue ‘A’ levels at the Millenium academy and later on got my Bachelors degree at the University of Nairobi’s School of Pharmacy.

There’s new hope for the 70,000 to 80,000 Americans who are currently living with sickle cell disease (SCD). Thanks to new guidelines for therapy, SCD patients have better pain control during acute pain crisis and reduced hospital stays. The guidelines were presented by Jennifer Yu, MD, a pediatric hematologist/oncologist at Rady Children's Hospital-San Diego and an assistant clinical professor of pediatrics at UC San Diego School of Medicine during the 2017 American College of Physicians (ACP) Internal Medicine Annual Meeting held in San Diego. Dr. Yu said these recommendations are based mainly on the National Institutes of Health’s Evidence-Based Management of Sickle Cell Disease, Expert Panel Report 2014.

The science behind sickle cell disease (SCD) is cruel. For approximately 100,000 American children and adults (and 10-15 million people around the globe), a mutation in a single gene means a lifetime of unpredictable and excruciating pain—along with exhaustion, serious infections, and collateral damage to the brain, heart, lungs, and other organs. Anemia, strokes, pregnancy problems, kidney disease, and joint pain are common. But the racial inequities that have hindered treatment advances for SCD—the most common inherited blood disorder in the United States—are far crueler. “I was at a conference recently where an older woman stood up and said she’d been in situations where she was effectively told, ‘Sickle cell disease is an African-American problem. It’s up to you guys to solve it,’ ” says physician Ted W. Love ’81, M.D., CEO of Global Blood Therapeutics (GBT) in South San Francisco. “But there’s no reason the greater society as a whole shouldn’t be solving this. And thankfully we’re starting to see it get the attention it deserves these days across the biotech industry and with drug regulators.”

Q: When were you diagnosed with sickle cell disease? A: Sickle Cell Disease is a genetic blood disorder, so I, like many patients, was diagnosed via amniocentesis (a prenatal medical test that can diagnose certain genetic conditions) during my mother’s pregnancy. Both of my parents were unaware of their sickle cell trait status until they were pregnant with me. This fuels my passion for helping people become cognizant of their sickle cell trait status so that, when family planning begins, they are fully informed of health risks. Q: Where did you grow up and how did your family help you to manage your condition? A: I am originally from Kalamazoo, Michigan, but I was raised in Union City, Georgia, and Fayetteville, North Carolina. My family is great when it comes to helping manage my disease. My mother cared for me exceptionally well, and she also let me know that I can do anything anyone else can. I never had the notion growing up that I couldn’t do something because of my condition; I just knew that my disease may slow me down from accomplishing it in the time others would. My mother allowed me to do what most other kids did, and I would often forget that I even had sickle cell until I got sick.

Roland Martin talks with Dr. Yvonne Carroll, Director of Patient Services, St. Jude Children’s Hospital, about sickle cell disease. June 19 is World Sickle Cell Awareness day.

The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. In this Podcast, we are featuring sickle cell clinical psychologist, Marsha Treadwell. We are talking about mental health, COVID-19 and tips and tricks to stay level headed and positive during these challenging times. To listen to the audio podcast, mouse over the title and click Play.

The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. It talks about sickle cell, sharing warrior experiences and providing sickle cell related education. To listen to the audio podcast, mouse over the title and click Play.Talking about all things sickle cell related, sharing warrior experiences and providing sickle cell related education.

The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. It talks about sickle cell, sharing warrior experiences and providing sickle cell related education. To listen to the audio podcast, mouse over the title and click Play. Talking about all things sickle cell related, sharing warrior experiences and providing sickle cell related education.

The VitaminSC3 Podcast is powered by the Sickle Cell Community Consortium. Today's show is brought to you by the Creative Elixir segment with Mia Robinson. 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.  

Stuck on sickle cell disease? We hammer out the basics of diagnosis, common sickle cell variants and their manifestations, preventive medicine, acute and chronic pain management, opioid use, and how to recognize and treat common complications like anemia, fever and acute chest syndrome. There is no clinical/laboratory standard for confirming an acute sickle crisis. There are several variants of Sickle Cell Disease (SCD) with treatment differences. Electrophoresis can confirm the diagnosis. Hydroxyurea can decrease crisis frequency, acute chest syndrome (ACS) events, need for transfusions, hospitalizations, and death. Indications for chronic red blood cell transfusion include: failed hydroxyurea therapy, severe disease with genoptyes other than HbSS, or secondary stroke prevention.

September is National Sickle Cell Awareness Month, designated by Congress to help focus attention on the need for research and treatment of sickle cell disease. Learn more about improving and standardizing care for sickle patient visits in the emergency department as you listen to this frank discussion with Dr. Caroline Freiermuth.  

Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts many patients’ quality of life in depression, anxiety, executive function, and more. With thanks in part to Bluebird Bio for making this series possible, and in partnership with The Sickle Cell Disease Association of America, OffScrip Health presents “The Sickle,” a three-part limited series for patients, caregivers, and community members facing the disease. Throughout each episode, you will hear from the people living with SCD and experts who work every day to improve their lives. We’ll learn about the lifelong care, interpersonal relationships, and medical disparities that people with SCD live with and what we can do to improve them.  

 The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. It talks about sickle cell, sharing warrior experiences and providing sickle cell related education. To listen to the audio podcast, mouse over the title and click Play. Open iTunes to download and subscribe to podcasts.Sickle Cell 101 is a 501(c)(3) nonprofit organization that specializes in sickle cell education on social media and other platforms. Their mission is: We are a non-profit organization educating all people affected by sickle cell through the use of social media.

Beverley Francis-Gibson is a President and CEO of the Sickle Cell Disease Association of America (SCDAA). Francis-Gibson knows about the pain of sickle cell disease- not as a patient, but as a family member who lost a loved one to the illness. She also knows about the harm done by the silence, rooted in ignorance and sometimes even shame, that is associated with the condition. Born in St. Thomas, U.S. Virgin Islands, in a tightknit family, she witnessed the misery endured by her cousin Vincent, who was born with sickle cell disease and was often so sick he couldn’t play with the other children. “It was very hot, so he remained indoors most of the time,” said Francis-Gibson. “He was hospitalized a lot, had jaundiced-looking eyes and seemed sickly to me all the time.” She was in high school when Vincent passed away. Because of her own family’s ordeal, Francis-Gibson became an advocate and, since March, the President and CEO of the Sickle Cell Disease Association of America.

Carolyn Rowley is a psychologist, patient advocate, founder and executive director of Cayenne Wellness Center and Children’s Foundation. From a young age, Rowley always had a strong faith and dreamed of one day working as a missionary to improve people’s lives. In a sense, she has fulfilled that dream by embarking on what she considers a divine mission as an advocate for those living with sickle cell disease in California. As founder and executive director of Cayenne Wellness Center and Children’s Foundation, Rowley has spent nearly 20 years working to reduce the barriers and discrimination faced by individuals with sickle cell disease while increasing awareness among patients, providers, and the public. But she’s not just an advocate; Rowley also is a patient. She experiences the very struggles of those who live daily with the painful disease and yet is determined to create a brighter, more equitable future.

Courtney Fitzhugh first became interested in sickle cell disease when she was in college, an interest she continued to pursue throughout medical school. During medical school, she participated in the NIH Clinical Research Training Program, where she studied with Dr. John Tisdale, one of the top researchers in bone marrow transplantation for sickle cell disease. Years later, she returned to NIH as a full-time researcher. Today, Fitzhugh’s research focuses on half-matched donors, people whose donor stem cells match only about half of the HLA antigens (proteins on the stem cells) of the recipient. The procedure has the potential to greatly expand the pool of sickle cell patients who might benefit from bone marrow transplants. Her work, combined with recent improvements in immunosuppressant medications, allowed half-matched transplant procedures to become more effective.

For many years, John Tisdale has been working on strategies to cure sickle cell disease by replacing the bone marrow cells that give rise to sickled red blood cells with bone marrow cells from a donor who does not have the disease. That transplantation strategy has shown remarkable results in children with the disease. Tisdale developed a modified transplant technique that is chemotherapy free to make it safer and more effective for adults and the technique is beginning to show great promise in patients undergoing this modified procedure. In August 2017, his research on bone marrow transplantation was featured in “First in Human,” a three-part television documentary produced by the Discovery Channel. It includes a compelling segment about a patient with sickle cell disease who underwent a bone marrow transplant procedure. Tisdale is currently leading a multi-center nationwide study to test the effects of an experimental gene therapy protocol for sickle cell disease.

Linda Thomas is a health care educator, patient advocate, minister, president and co-founder of the Sickle Cell Association of Texas Marc Thomas Foundation. In 1997, Linda and her husband, Pastor Marc Thomas, began the Sickle Cell Association of Texas. Pastor Marc suffered from sickle cell disease and passed away in 2005 at the young age of 46. As President and CEO of the organization that would later bear her husband’s name, Linda is not only keeping her husband’s legacy alive but providing vital services to the sickle cell community in Texas, including health education to patients and health care professions as well as advocacy on behalf of patients. Linda was instrumental in getting legislation passed for newborn sickle trait testing in the state of Texas. She currently oversees three office locations in Houston, San Antonio, and Austin.

It wasn’t until her second year in medical school at the University of Pennsylvania that Marjorie DeJoie-Brewer found out that she had SCD. She had never had to manage pain quite like that, and “it was a steep learning curve,” she says. But learn, she did, quickly discovering that treatment options were scarce. So when she finished her training, she had an idea: Why not use her expertise in internal and rehabilitation and sports medicine to help SCD patients learn how to take better care of themselves? Now, in addition to all manner of volunteer efforts, DeJoie-Brewer wears three hats in service to the SCD cause: medical director for her local SCD association, research clinician at Children’s Hospital, and owner of her own private wellness practice.

Wanda Whitten-Shurney is a pediatrician, advocate, CEO and medical director for the Sickle Cell Disease Association of America (Michigan chapter). Dr. Whitten-Shurney has a long and accomplished history of helping children and their families manage sickle cell disease. A pediatrician by training, Dr. Whitten-Shurney has provided care for children living with sickle cell disease at Children’s Hospital of Michigan for the past 30 years. She is director of the coordinating center for Newborn Hemoglobinopathy Screening Program for the Michigan Department of Health and Human Services. Wanda was the driving force in the establishment of the Sickle Cell Donor Program for the American Red Cross of Southeastern Michigan. Currently, she is CEO and medical director of the Michigan chapter of the Sickle Cell Disease Association of America (SCDAA). Her father, the late Dr. Charles Whitten, was one of the co-founders of the national SCDAA and a pioneer in sickle cell education and outreach.

In 1979, while she was volunteering at a camp for SCD patients, Pat Corley — then a nurse manager at the Los Angeles + University of Southern California Medical Center — caught the attention of a noted hematologist, who was so impressed that he tapped her to become nurse coordinator for an NIH SCD center. Some 38 years later, Corley is still in the game, doing the work she says she loves most — educating health professionals, medical school students, and the public about grave misconceptions about the disease, all while empowering patients to live their healthiest lives. It’s work she’s received so many honors for that Corley could have rested after retiring two years ago. But she hasn’t let up. She volunteers at her former job and for other SCD advocacy groups, spreading the gospel of SCD awareness almost daily.

Swee Lay Thein was educated in both Malaysia and the United Kingdom. She has long been interested in studying blood disorders, particularly the clinical and molecular aspects of sickle cell disease and beta-thalassemia. She served as clinical director of the Red Cell Centre in King’s College Hospital, where she treated a large cohort of adult patients with sickle cell disease. As a laboratory researcher, she developed a strong interest in fetal hemoglobin, the main hemoglobin in fetuses that is responsible for transporting oxygen during fetal life and in infants until they are about 6 months old. Fetal hemoglobin protects against complications of sickle cell disease by blocking the effects of sickled hemoglobin. Dr. Thein’s research explores the underlying genetic mechanisms affecting the formation of fetal hemoglobin, which could lead to new ways to reduce the severity of sickle cell disease complications, including pain.

It was not until their daughter was born five years ago with SCD that Tanielle Randall and her husband found out he was a carrier of the disease. Two years later, she would discover that her second child had the disease. But Randall quickly decided she had to “emotionally move past the fact that my children have this illness and start being proactive and the best parent I could be.” So she dug in, learning everything she could, and eventually joined the board of the Kids Conquering Sickle Cell Disease Foundation. Now, in addition to holding down a full-time job while caring for her daughters, Randall offers resources and advice to other families who are on a similar journey.

In the U.S., an estimated 100,000 Americans live with sickle cell disease, or SCD. Yet, despite its impact, the disease and its patients remain largely out of the public eye.This hour, C-HIT reporter Peggy McCarthy helps us understand why. We discuss the realities of SCD awareness and hear from a New Haven resident living with the disease.

The podcast is presented by sickle cell warrior Ade Adeyokunnu. He is also an advocate for sickle cell. He is also an ambassador of Global Blood Therapeutics. Why I became an advocate for Sickle Cell Disease? The fact that I have it and my sister also has it is the reason for why I became an advocate for the disease. While I was at school, I felt lonely because I didn’t find anyone else going through the same things as I was going through with sickle cell. That was what drove me to start my advocacy for sickle cell and eventually lead me to create this online community for people living with sickle cell back in 2009.

About 100,000 Americans have sickle cell disease (formerly known as sickle cell anemia). Most of them are black. And many of them have faced challenges from the health care industry in getting their condition addressed. Sickle cell disease can cause chronic pain, multi-organ failure and even lead to strokes. Kaiser Health News reports that patients and their families say the search for treatments is “slow, underfunded, ineffective or too limited in scope.” In summer of 2017, the FDA approved a new sickle cell drug — the first in two decades — making it just the second option on the market for patients. It recently hit pharmacy shelves, but insurers have backed away from covering it, leaving the average monthly cost of $3300 up to patients to pay.

Welcome to SCDAI! Do you have sickle cell disease (SCD)? Are you a parent or family member of someone who has SCD? We'd love to meet you!

Welcome to SCDAI! Do you have sickle cell disease (SCD)? Are you a parent or family member of someone who has SCD? We'd love to meet you!

Sick Cells elevates the voices of the sickle cell community.

Sickle cell disease + sickle cell trait — certified educators and experts — send questions to ask@sc101.org — bulletin board: @sicklecellplus

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Foundation for Sickle Cell Disease Research. Dedicated Standalone Treatment & Research Center in and for the Community, in the US.

Scientist|Doctor - Sickle Cell Disease from Tanzania Biomedical Science in Africa Health. Education. #Sicklecell Helpline 0769680688

Writer, blogger & advocate for people living with sickle cell disease

The Sickle Cell Disease Association of America (SCDAA) serves as the nation's headquarters for support and advocacy of Sickle Cell Disease and search for a cure.

Lakiea Bailey, Ph.D Sickle cell disease advocate, activist, research scientist...and occasionally...patient... with a doctorate in molecular hematology and regenerative medicine.

Sickle cell education. "Awareness is the cure."

Twinmom, wife, and pediatric hematologist specializing in sickle cell disease.

We are the world's first dedicated sickle cell news-magazine. We intend to teach, inform and help reduce the burden of sickle cell on family and society.

We connect people who understand Scd and genuinely relate to one another without biases. We seek to foster a community that encourages, inspires and empowers us

A Sick Life chronicles Tionne's journey from a sickly young girl from Des Moines who was told she wouldn't live to see 30 through her teen years in Atlanta, how she broke into the music scene, and became the superstar musician and sickle-cell disease advocate she is today. Through Tionne's tough, funny, tell-it-like-it-is voice, she shares how she found the inner strength, grit, and determination to live her dream, despite her often unpredictable and debilitating health issues. She dives deep into never-before-told TLC stories, including accounts of her friendship with Lisa "Left-Eye" Lopes and her tragic death. Tionne's unvarnished discussion of her remarkable life, disease, unending strength, and ability to power through the odds offers a story like no other.

This powerful book gives you a behind the scenes look at what it's like to live with the chronic illness, Sickle Cell Anemia. Diagnosed at the tender age of two James faced many daily obstacles and challenges because of his condition but stayed determined not to let it define him. Out of the fear of being judged and looked upon negatively by others, James worked diligently to keep his health a secret and chose never to discuss it openly with anyone. Now with his first published book Breaking Silence: Living With Sickle Cell Anemia, he's done the unthinkable by opening up and revealing all about his illness.

Dazzling Mirage is the story of Funmiwo, the adoptive daughter of the Adebayos, the story of her travails and triumphs against the odds of physical pains and psychological traumas which she experienced in the journey towards self-fulfillment. Frail in body but full of spirit and talent, Funmiwo represents the several thousands of sickle cell patients who live in hope; the parallel reference to the life of another anemic character.

Sickle Cell Disease is the most common blood disorder in the U.S. Hope & Destiny provides clear-cut and in-depth information for the more than 80,000 Americans living with sickle cell disease. Written especially for parents and caregivers, it offers the latest information on preventing complications, research, and treatment. The knowledge patients and family members need is organized in an easy-to-read format that promotes overall healthy living.

Sickle cell disease (SCD) is a group of blood disorders that affect hemoglobin, the molecule in red blood cells that carries oxygen to cells throughout the body. The CDC estimates that 90,000 to 100,000 Americans have SCD, making it a major public health concern that brings with it considerable financial consequences due to the higher number of hospitalizations and increased medical expenditures that sickle cell patients experience over a lifetime compared to the general public. Our best-selling book series today is the Hope & Destiny series, which includes a book written just for adolescents and families impacted by sickle cell disease. Hope and Destiny Jr. is now available in this new 48-page abridged workbook edition for young SCD patients to learn more about their disease, identify their pain, track symptoms and side-effects of treatments and medications, and write about the unique challenges and changes they may be experiencing so they can discuss with their doctor.

Just Like Me!!! is a picture book designed for young children with sickle cell disease. Filled with colorful pictures and simple concepts, this resource is an easy reference for children to use when they have questions about their disease. Parents, use this story to help your children understand the sickle cell disease process. This book can also be used by sickle cell providers and staff members as a resource for young sickle cell disease patients. Review the glossary of terms often used in the care of children with sickle cell disease. This book does not replace the expertise of the healthcare provider who specialize in sickle cell disease. if you have specific questions, please consult your healthcare provider.

After raising my son who has sickle cell disease SS I was sure I was prepared for all of his challenges until at 18 he had a stroke. It forced me to be as strong as I can for him and my other family members. One thing that comforted me was awareness and knowledge and having the tools to stand up and fight. Lee is a boy who has sickle cell and is going to school and he is faced with adversity so he decides to open the eyes of those who want to see the world he lives in by having sickle cell. Lee gives his voice to those who are silenced by shame and ignorance.

"Little George and the Dragon" tells the story of Little George, a sickle cell warrior, who helps his neighbors deal with a painfully annoying dragon who dropped out of the sky and onto their street by teaching them about how he deals with sickle cell, which can also be painful and annoying.

My Friend Jen is the series of children’s books written by Jenica Leah with the aim to promote sickle cell awareness and to give young children with sickle cell the peace of mind she didn’t have. It is a great tool for creating a better understanding of the blood disorder.

 Most of us aren’t looking for recipes that add calories. But for families with sickle cell disease, it’s a different story. Because kids and teens with sickle cell disease break down red blood cells faster than other children do, their bodies use more energy and need more calories to maintain health, avoid complications and keep pace with their peers. High calorie foods and extra snacks can be very helpful. Recognizing this, and not seeing another resource that quite fit the bill, the sickle cell team at Nemours/Alfred I. duPont Hospital for Children, led by dietitian Michell Fullmer, developed a unique cookbook offering recipes for appealing calorie-dense meals and snacks. For people with sickle cell disease, a diet that provides plenty of fuel in the form of calories, protein, vitamins and minerals helps to replace red blood cells.

Two health educators have written a children’s book about living with sickle cell disease (SCD). I’m No Different Than You tells the story of Kayla, a girl who has a positive outlook on life despite the challenges of managing a chronic medical condition. After having to attend a new school, Kayla is worried about how others will react to learning that she has SCD. Kayla’s friendships are quickly changed by the lack of understanding, and fears of the other children. The authors, Jaime Mahaffey MSW, LISW, and Kristy High, MEd, wrote the book in honor of children who suffer from chronic medical conditions. Mahaffey, a social worker, has a 15-year-old daughter, Kayla, who was diagnosed with SCD shortly after birth. High, a health and wellness educator, is the godmother of 12-year-old Kristy who also lives with sickle cell disease.

Check out this first issue of The Sickle Cell Warriors. Follow along with the heroes as they watch out for Terrance and help him advocate for himself at school.

Sickle What? is an educational book written in simple language with helpful illustrations to explain complex medical concepts and terminology. Sickle What? arms patients and parents of newly diagnosed children with the knowledge they need to understand and manage sickle cell disease (SCD). Information about what SCD is and how a person gets it is broken down into easy-to-understand terms to help parents better understand and be able to explain SCD to a child – empowering the child to understand what is actually happening inside their body. Sickle What? shows readers how to read and understand a lab report, what action steps to take when pain occurs and the importance of asking questions and communicating openly with doctors.

This book offers the opportunity for people who have Sickle Cell disease to see that they are not alone. An individual reading this book will be able to identify with Mrs. Friend and see that they have common experiences even if they live miles apart. The other thing this book offers is hope. It shows that those with sickle cell disease can overcome the illness and live successful and meaningful lives.

When Gail Campbell Woolley was seven, a pediatrician told her mother that Gail suffered from sickle cell anemia, a rare blood disease, and that she would be dead by age 35. While others may have responded to this horrifying news by descending into a fog of self-pity, Gail went in the opposite direction. She decided to live an eventful, exciting life that ultimately included―despite a troubled home life and the systemic racism and sexism of the late 20th century―academic success, an impressive career, a long and loving marriage, and the ability to leave her unmistakable stamp on every person she met. By the time she finally succumbed to her disease at age 58 in 2015, she had ground that doctor's words into dust. Soar, written in the last two years of her life, is Woolley's powerfully inspiring story, and its publication checks the last item off her extraordinary bucket list, which also included traveling to every continent except Antarctica.

The American Society of Hematology (ASH) is committed to addressing the burden of sickle cell disease (SCD) and is undertaking a multifaceted initiative to improve outcomes for individuals with the disease, both in the United States and globally. ASH has engaged a broad group of experts and stakeholders to review the state of SCD and identify the greatest opportunities for improvement. ASH continues to invest in and explore the important actions needed to make a significant difference in SCD access to care, research, and global issues.

One person can help save hundreds of lives by hosting a blood drive. It's a rewarding experience. See locations, promotions and news based on ZIP Code.

What Is the New CA Sickle Cell Disease (SCD) Mental Health and Wellness Initiative? We believe that free counseling should be accessible to all California residents living with Sickle Cell Disease (SCD). Beginning April 1, 2022, Cayenne Wellness Center’s Sickle Cell Education, Advocacy, and Support, will start to meet the unique needs of the sickle cell community by offering the following types of mental health and wellness services: • Mental Health Counseling • Health Coaching • Holistic Health Consultation Who Are the Providers? We have listened and made sure the compassionate counselors, coaches, and consultants who are committed to sickle cell and your well-being.   Who Can Participate in the CA SCD Mental Health and Wellness Program Services?   The California SCD Mental Health and Wellness Initiative were explicitly created for California residents over 16 years old living with sickle cell disease. The licensed professionals specializing in individual counseling, health coaching, and holistic health will provide the services.  

This site is a collaboration between members of the Emory Center for Digital Scholarship, the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, the Emory School of Medicine, and the Comprehensive Sickle Cell Center at Grady Health System, Atlanta, Georgia.

Sickle Options’ website is developed based on input from individuals with sickle cell disease and their caregivers. You can learn about: – Sickle Cell Disease – Hydroxyurea – Endari – Bone Marrow Transplant – Chronic (monthly) Blood Transfusions Features of this site- As a registered user, you may manage your personal files by following these steps. – Click on the triangle at the top right of any page to view this file – Write notes – View saved website content – Print items in your file – Access this file and discuss it with your healthcare provider

The Sickle Cell Trait Awareness Campaign is a five-year effort launched this month by Cayenne Wellness Center, which supports people living with sickle cell disease in California. It aims to provide education and encourage success. It helps in learning about your genetics and understanding how they are incorporated into your everyday life, which is a major step in achieving personal success. They want to provide education about Sickle Cell Trait (SCT) for those affected by it and give resources that will do just that.