Sickle Cell Newsletter for February 2017
News Suspicions in the ER: a consequence of the opioid epidemic http://www.newsworks.org/index.php/local/item/100321-suspicions-in-the-er-an-unexpected-consequence-of-the-opioid-epidemic Diabetes drug metformin can help fight sickle cell disease, study shows https://knowridge.com/2017/01/diabetes-drug-metformin-can-help-fight-sickle-cell-disease-study-shows/ Researchers at Baylor College of Medicine and Texas Children’s Cancer and Hematology Centers have discovered a gene, FOXO3, involved in controlling fetal hemoglobin production. In addition, the researchers were able to […]
Sickle Cell Newsletter for December 2016
News Crizanlizumab for the Prevention of Pain Crises in Sickle Cell Disease http://www.nejm.org/doi/full/10.1056/NEJMoa1611770#t=article The up-regulation of P-selectin in endothelial cells and platelets contributes to the cell–cell interactions that are involved in the pathogenesis of vaso-occlusion and sickle cell–related pain crises. The safety and efficacy of crizanlizumab, an antibody against the adhesion molecule P-selectin, […]
Sickle Cell Newsletter for October 2016
News Gene therapy for sickle cell disease passes key preclinical test- Decades-old discovery about fetal hemoglobin is on track for clinical trial in the coming year http://news.harvard.edu/gazette/story/2016/09/gene-therapy-for-sickle-cell-disease-passes-key-preclinical-test/ A precision-engineered gene therapy virus, inserted into blood stem cells that are then transplanted, markedly reduced sickle-induced red-cell damage in mice with sickle cell disease, researchers […]
Sickle Cell Articles in Black Magazines
Ebony and Jet have highlighted news stories that are marketed specifically towards African-Americans since 1945 and 1951 respectively. Because sickle cell trait and disease affects many African-Americans, it has been covered in several articles in both Ebony and Jet magazines. According to the National Institute of Health, about 1 in 13 African-American babies are born with sickle cell trait and about 1 in 365 black children are born with sickle cell disease. In this section, we have summarized a few articles from a myriad of magazine articles from over several decades that discuss sickle cell. These articles raise sickle cell awareness, highlight individual actors and organizations that have made a difference, share information, personal stories, and more.
World Sickle Cell Day 2016 Photo Gallery
Courtesy of Fédération Française des Associations de Malades Drepanocytaires et Thalassemiques Website: www.sosglobi.fr Instagram: @fmdtsosglobi Courtesy of Sickle Life Website: www.sicklelife.org Instagram: @sickle_life Courtesy of Sickle Cell Ireland Website: www.sicklecellsocietyireland.org Instagram: @sicklecellireland
Understanding the Impact of Sickle Cell Disease
This infographic for sickle cell awareness was produced by the new Sickle Cell Disease Coalition, formed by American Society of Hematology.
Sickle Cell Newsletter for September 2016
News Landmark Article in New England Journal of Medicine Health experts have long believed that sickle cell gene variants, which occur in about 1 in 13 African-Americans, increase the risk of premature death, even when people carry only a single copy of the variant. But health records of nearly 50,000 active-duty U.S. Army […]
Sickle Cell Newsletter for July 2016
News Up to $25 million in Funding for Management of Care Transitions for Emerging Adults with Sickle Cell Disease Thank you again for participating in the “Management of Sickle Cell Disease” workshop hosted by the Patient-Centered Outcomes Research Institute (PCORI) on March 7, 2016. Based on the results of the meeting, we would like […]
Mobile Apps for Sickle Cell Patients
Sickle Cell Services By Bedford, Louis & Ellicott, LLC The Sickle Cell Disease Association of America, Inc. (SCDAA) has released The Sickle Cell Services Mobile App. It provides members of the SCD community access to a database of medical and support services, national news, live message feed from SCDAA and also incorporates a messaging […]
City Spotlight: Oakland, California
Shining the sickle cell spotlight on Oakland, California, reveals a rich history of activism, medicine, and commitment that began in the 1960’s and continues into the twenty-first century. In 2016, the Northern California Comprehensive Sickle Cell Center at Children’s Hospital & Research Center Oakland (now UCSF Benioff Children’s Hospital Oakland) remains the epi-center for sickle cell treatment and research serving the San Francisco Bay area and surrounding region in Northern California.
FDA Campaign for Clinical Trial Diversity
FDA is releasing six public service announcements, a blog, and an infographic to encourage people of diverse races and ethnicities to participate in clinical trials.
You can be a #ClinicalTrialsChampion by sharing these resources far and wide! Spread the word: a person’s race or ethnicity can affect how his or her body responds to medicine.
Addiction Guide
Addiction Guide was created to provide the most comprehensive up-to-date information about various addictions and how to overcome them. We are not a treatment center, but through our network of centers and connections across the country we can provide outlets for people seeking help. We are a diverse team of recovering addicts, healthcare professionals, and patient advocates who can provide you with tools and advice to help you regain control of your life. By increasing awareness and including this resource on your page, millions of Americans across the globe will have the best opportunity to find the right treatment for them and improve their quality of life.
Our mission at Addiction Guide is to serve you. By spreading awareness, more and more people can become educated about their treatment options. We understand that there is no perfect formula for recovery. Everyone’s journey is different but we firmly believe that with the right help, a personalized recovery plan can be created for everyone. Visit www.addictionguide.com to learn more.
Early History of Sickle Cell Disease
To the left is an image of Africanus Horton, also known as James Beale. He was born in 1835 in Gloucester Village, Sierra Leone, to parents of Igbo descent. The British chose Dr. Horton to be trained as the army medical officer for their post in West Africa. He began his training at the University […]
What to Know About Low THC (Cannabis) Oil Use in Georgia
In April 2015, Georgia Gov. Nathan Deal signed into law the Haleigh’s Hope Act. This law legalizes the medical use of low-THC oil (cannabidiol or cannabis oil) for alternative treatment of certain approved medical conditions in children and adults, including sickle cell. For sickle cell patients, the diagnosis must be severe or end stage, as determined by the physician.
Visit the Children’s Healthcare of Atlanta (http://www.choa.org/Patients-Families/During-Visit/Childrens-Hospital-Patient-Safety/Medicine-Safety/Low-THC-Cannabis-Oil) and/or the Georgia Department of Public Health (http://dph.georgia.gov/low-thc-oil-registry) websites to learn more about low THC oil.
Sickle Cell Newsletter for June 2016
News Sickle Cell in Focus Conference June 2 & 3, 2016 Natcher Conference Center (Building 45) National Institutes of Health 45 Center Drive Bethesda, MD 20892 Sickle Cell in Focus (SCiF) is an annual two-day intensive and educational conference co-hosted by the National Heart, Lung and Blood Institutes (NHLBI) in Washington, DC and the South […]
Documents Relating to Dr. Francis-McBarnette
Dr. Francis-Mcbarnette, an American pediatrician, was a pioneer in treating children with sickle cell anemia.
Sickle Cell Newsletter for April 2016
News Scientists uncover new way to grow rare life-saving blood stem cells Enhanced numbers of stem cells for transplantation possible https://www.sciencedaily.com/releases/2016/04/160427150323.htm A protein called Musashi-2 regulates the function and development of important blood stem cells. This knowledge provides new strategies that can be used to control the growth of these cells — cells that can […]
Financial Aid for Minority Students: Resource List from OnlineSchools.org
In recent years, a nationwide emphasis on the importance of diversity (particularly on college campuses) has generated many scholarships and grants for students who belong to underrepresented minority groups. OnlineSchools.org’s comprehensive scholarship list includes financial aid opportunities exclusively reserved for African-Americans, Hispanics, women, and other specific minority groups, as well as more generalized awards that are made available to applicants belonging to any underrepresented demographic. Read more…
CHECK – Medicaid Care Coordination for Families with Sickle Cell
CHECK’s mission is to improve the coordination of health care for children and young adults with chronic conditions by engaging and collaborating with them, their families, and their communities to provide tailored disease specific programs and to reduce their barriers to accessing medical, behavioral, and social services. CHECK provides modules on youth and parent sickle cell education. CHECK was developed for the Centers for Medicare and Medicaid Innovations CHECK project, copyright University of Illinois Board of Trustees. Read more…
City Spotlight: Atlanta, Georgia
Atlanta has long been a national center for the treatment of sickle cell disease and for cutting edge research on this blood disorder that affects more than 100,000 patients in the United States and millions worldwide. In 1978 Emory University Hospital recruited James R. Eckman, MD to come to Atlanta to start and direct a new center for sickle cell disease at Grady Memorial Hospital. The first 24-hour clinic in the world devoted to sickle cell patients, in 2016, the Georgia Comprehensive Sickle Cell Center at Grady has a staff of thirty, sponsors research and has treated thousands of patients.
Sickle Cell Newsletter for March 2016
Launch of the New SCInfo.org Website The Sickle Cell Information Center website, www.scinfo.org began in 1997, shortly after internet communication took off. Founded by James R. Eckman, MD, Professor of Hematology and Medical Oncology at the Winship Cancer Institute and Professor of Medicine and Adjunct Professor of Pediatrics in Medical Genetics at Emory University School […]
NIH RePORTER: Federally-Funded Sickle Cell Research
View NIH RePORTER’s list of funded sickle cell research.
Uncertain Suffering (2009)
In a wide ranging analysis that moves from individual patient cases to the compassionate yet distanced professionalism of health care specialists to the level of national policy, Carolyn Moxley Rouse uncovers the cultural assumptions that shape the quality and delivery of care for sickle cell patients. She reveals a clinical world fraught with uncertainties over how to treat black patients given resource limitations and ambivalence. Learn more and buy the book on Amazon.
Managing Sickle Cell Disease: In Low-Income Families (2003)
Shirley A. Hill examines how low-income African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family’s health care. Learn more and purchase the book on Amazon.
Backdoor to Eugenics (2003)
Considered a classic in the field, Troy Duster’s Backdoor to Eugenics was a groundbreaking book that grappled with the social and political implications of the new genetic technologies. Completely updated and revised, this work will be welcomed back into print as we struggle to understand the pros and cons of prenatal detection of birth defects; gene therapies; growth hormones; and substitute genetic answers to problems linked with such groups as Jews, Scandanavians, Native American, Arabs and African Americans. Duster’s book has never been more timely. Learn more and purchase the book on Amazon.
People’s Science: Bodies and Rights on the Stem Cell Frontier (2013)
People’s Science uncovers the tension between scientific innovation and social equality, taking the reader inside California’s 2004 stem cell initiative, the first of many state referenda on scientific research, to consider the lives it has affected.
Parent’s Guide to Cord Blood Foundation
Cord blood treats over 80 diseases including leukemia and lymphoma. Donations are painless and are being used to save the lives of children and adults around the world. To learn more and download a free guide, click here.
“Sickle Cell Boy”: An Illustration by Ellen Weinstein
“Sickle Cell Boy” was created by New-York based illustrator Ellen Weinstein. The illustration was used in a New York Times blog piece titled “Easing the Pain of Sickle Cell Disease” written by Roni Caryn Rabin.
William Bratton Fights Sickle Cell Anemia as He Battles for Playing Time for the Rockets
It usually begins as a pain in his lower back. Next it moves to his joints, creeping slowly into his elbows and knees. By then, William Bratton knows it’s coming. And there is nothing he can do to stop it. All there is left to do is get to the hospital as quickly as possible and hope it’s not as bad as the last time.
In the jargon of sufferers of sickle cell diseases, it’s called a “crisis.” For Bratton and thousands like him, it means only one thing: excruciating pain.
The Power of Information: A Letter from Michael Cobb
My name is Michael Cobb and I have sickle cell anemia. In the beginning I did not let this bother me. As a kid I still did the things other kid did, But not realizing that I could not do them at the same extent as other Children. This lead to many crises. Not wanting this to be an excuse for me not to try, I still tried and like ever so often I went into a crisis. I even tried the armed services. In my fifth week of boot camp running the Mile and a half I then again went into another crisis. Feeling the pain and humiliation of once again my body not giving way to let me do what I wanted to do. This was the experience that would change my life forever.