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Sickle Cell News for December 2018

By Erin Hecht On November 30, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   New information about sickle cell trait The November 3rd issue of Annals of Internal Medicine published a comprehensive review article by leading sickle cell experts from around the US. They reviewed all of the relevant published evidence about the health outcomes of those with [...]
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Available Scholarships for Student Caregivers

By Erin Hecht On November 9, 2018 · Add Comment · In Patients and Families - Other, Teachers and Students - General Information
List of Available Scholarships for Student Caregivers | The Caring.com Scholarship | Caring.com is a leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. We offer thousands of original articles, helpful tools, advice from more than 50 leading experts, a community of caregivers, and a comprehensive directory of caregiving services.
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Sickle Cell News for November 2018

By Erin Hecht On November 6, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   NIH launches initiative to accelerate genetic therapies to cure sickle cell disease https://www.nih.gov/news-events/news-releases/nih-launches-initiative-accelerate-genetic-therapies-cure-sickle-cell-disease The National Institutes of Health announced the launch of a new initiative to help speed the development of cures for sickle cell disease, a group of inherited blood disorders affecting at [...]
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Sickle Cell News for October 2018

By Erin Hecht On October 3, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   NIH launches initiative to accelerate genetic therapies to cure sickle cell disease https://www.nih.gov/news-events/news-releases/nih-launches-initiative-accelerate-genetic-therapies-cure-sickle-cell-disease The National Institutes of Health announced the launch of a new initiative to help speed the development of cures for sickle cell disease, a group of inherited blood disorders affecting at [...]
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Sickle Cell News for September 2018

By Erin Hecht On August 30, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   The American Society of Hematology is seeking comments on draft clinical practice guidelines on sickle cell disease-related transfusion support. Materials are available at www.hematology.org/Guidelines-Public-Comment. The deadline to comment is Monday October 1, 2018. This comment period is open to all ASH members and the [...]
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Sickle Cell News for August 2018

By Erin Hecht On August 2, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   Therapy with L-Glutamine reduces pain in patients with sickle cell disease https://www.ucsf.edu/news/2018/07/411221/new-study-shows-l-glutamine-decreases-sickle-cell-pain-crises-hospitalizations CSF Benioff Children’s Hospital Oakland clinical researchers, in conjunction with other sickle cell centers and scientists at Emmaus Life Sciences, Inc., have demonstrated that therapy with L-Glutamine reduced the frequency of pain [...]
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Sickle Cell News for July 2018

By Erin Hecht On June 30, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   The Centers for Disease Control and Prevention (CDC) is sharing new resources on transition to help teenagers and young adults with sickle cell disease (SCD) ‘step up’ and to take ownership of their own health. These resources aim to support and to empower young [...]
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Sickle Cell News for June 2018

By Erin Hecht On June 6, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   Sickle Cell Patients Suffer As Disparities In Care, Research Persist http://www.courant.com/news/connecticut/hc-sickle-cell-20180511-story.html When 9-year-old Jeremy Brown is in pain, it feels like he is being stabbed. The pain experienced by Deborah Oliver, 40, is like 100 simultaneous charley horses. Brown, of Bridgeport, and Oliver, of [...]
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Addiction Resources

By Erin Hecht On May 13, 2018 · Add Comment · In Patients and Families - Medical Information
Addiction Resource Addiction Resource is a dedicated organization that works to better the community through volunteering and health awareness.  Addiction Resource  raises awareness of the impact of drug use (including alcohol) on the human body. Combined Effects of Smoking and Drinking Vaping Daily provides an article about combined effects of drinking and smoking on the [...]
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Educational Coloring Book for Children: The Bear Necessities of Sickle Cell

By Erin Hecht On May 12, 2018 · Add Comment · In Patients and Families - Children, Uncategorized
Coloring is a popular pastime that both children and adults enjoy.  It has recently become more popular for adults because of the calming effect of the activity.  Over the years, I have observed both parents and children coloring popular cartoon characters in our inpatient and outpatient waiting areas.  I developed a coloring book that could [...]
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Full Length Feature Film about Friendship and Life with Sickle Cell Disease

By Erin Hecht On May 12, 2018 · Add Comment · In Patient Narratives - Video
Spilled Milk is a film about two lifelong friends – a white guy from Utah and a black guy from New Jersey. Omar is living with Sickle Cell Disease; Jaqai has uprooted his life to make a documentary about him.
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Reducing Complications of Therapeutic Blood Transfusion in Sickle Cell Disease

By Erin Hecht On May 12, 2018 · Add Comment · In Blood Banks & Donors, Healthcare Providers
Video teaching course for CEU/CME PROGRAM DESCRIPTION: Activities are designed to increase knowledge and change competency of transfusion practices and strategies for individuals with hemoglobin disorders.  Content is derived from actual peer-reviewed publications.
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Qualifying for Social Security Disability with Sickle Cell Disease

By Erin Hecht On May 1, 2018 · Add Comment · In Patients and Families - Children, Patients and Families - Featured Resources
Download this page in PDF format: Qualifying for Medical Benefits If you or your child has sickle cell anemia, you may be eligible for financial assistance. The Social Security Administration (SSA) offers aid to people and adults of all ages who are unable to work or participate in typical childhood activities. Sickle cell disease is listed [...]
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Sickle Cell News for May 2018

By Erin Hecht On May 1, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   Doctors at the University of Illinois Hospital have cured seven adult patients of sickle cell disease, an inherited blood disorder primarily affecting the black community, using stem cells from donors previously thought to be incompatible, thanks to a new transplant treatment protocol. The doctors [...]
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Sickle Cell News for April 2018

By Erin Hecht On March 31, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News New Full Length Feature Film about Friendship and Life with Sickle Cell Disease Spilled Milk A FILM BY FRIENDS ABOUT FRIENDS Spilled Milk is a film about two lifelong friends – a white guy from Utah and a black guy from New Jersey. Omar is [...]
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Sickle Cell News for March 2018

By Erin Hecht On March 1, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News Terrific Teens (& Fabulous Families) – stories of resilience, love and creativity when living with sickle cell disease By Claudia Gore Storyteller, story-bringer, doctor, allergist, paediatrician, patient Imagine an unbearable itch for 24 hours a day and couple this with having to watch what you [...]
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Sickle Cell News for January 2018

By Erin Hecht On January 11, 2018 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News Stopping the Sickle Cycle – Where are we? By Allan Platt PA-C, MMSc In 1977, the published life expectancy for a sickle cell disease patient was mid teens. Forty years later, in 2017, life expectancy in the US has grown with identification of patients with [...]
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Sickle Cell News for December

By Erin Hecht On December 11, 2017 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News Increasing hydroxyurea dose helps to keep young sickle cell patients out of the hospital https://www.stjude.org/media-resources/news-releases/2017-medicine-science-news/higher-hydroxyurea-dose-improves-outcomes-for-young-sickle-cell-patients.html St. Jude Children’s Research Hospital investigators have shown that using the drug hydroxyurea to boost average fetal hemoglobin levels above 20 percent in children and teenagers with sickle cell anemia [...]
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Sickle Cell News for November

By Erin Hecht On November 4, 2017 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   Hydroxyurea appears safe for African children with sickle cell anemia https://www.healio.com/hematology-oncology/hematology/news/in-the-journals/%7B7d880f0c-863c-4de1-a5c4-5e35cd906c0e%7D/hydroxyurea-appears-safe-for-african-children-with-sickle-cell-anemia Hydroxyurea did not increase the risk for malaria infection in children with sickle cell anemia who live in malaria-endemic regions of Uganda, according to the results of a randomized, double-blind clinical trial published [...]
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Sickle Cell News for October

By Erin Hecht On October 4, 2017 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   Making Advances Against Sickle Cell Disease FDA – https://blogs.fda.gov/fdavoice/index.php/2017/09/making-advances-against-sickle-cell-disease/ As September — Sickle Cell Awareness Month — comes to a close, we take this opportunity to reflect on how much must be done to help patients in need and educate others on sickle cell disease — and [...]
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Sickle Cell News for September

By Erin Hecht On September 7, 2017 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   Sickle-Cell Patients See Hope in CRISPR The disease may be among the first to be treated with the novel gene-editing tool. https://www.technologyreview.com/s/608641/sickle-cell-patients-see-hope-in-crispr/ Hertz Nazaire is a soft-spoken artist who likes to paint in bright colors, with subjects like rainbow palm leaves and dancing women [...]
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Sickle Cell News for August

By Erin Hecht On August 15, 2017 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   ASH to Develop Clinical Guidelines to Improve Care for People with Sickle Cell Disease the American Society of Hematology (ASH) is working on several projects to conquer sickle cell disease (SCD) worldwide. Among them, the Society has launched an effort to develop clinical practice [...]
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Sickle Cell News for July 2017

By Erin Hecht On July 11, 2017 · Add Comment · In Newsletter
To join or leave the listserv, visit https://scinfo.org/newsletter/   News   FDA approves new treatment for sickle cell disease  – First approval for this rare blood disorder in nearly 20 years https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm566084.htm The U.S. Food and Drug Administration today approved Endari (L-glutamine oral powder) for patients age five years and older with sickle cell disease [...]
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Sickle Cell News for June 2017

By Erin Hecht On June 19, 2017 · Add Comment · In Newsletter
News FDA Advisory Committee Gives Thumbs Up for L-glutamine for Sickle Cell Disease http://www.raredr.com/news/fda-advisory-glutamine The U.S. Food and Drug Administration’s (FDA) Oncologic Drugs Advisory Committee voted 10-to-3 that the overall Benefit-Risk profile of Endari (L-glutamine) for treating patients with sickle cell disease is favorable. The FDA is set to make its final decision on the drug [...]
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Sickle Cell Newsletter for May 2017

By Erin Hecht On May 8, 2017 · Add Comment · In Newsletter
News How Yogurt Science Could Lead To A Cure For Sickle Cell Anemia http://www.wbur.org/commonhealth/2017/04/28/yogurt-sickle-cell-anemia The discovery of CRISPR and gene editing was not made by a geneticist or a stem cell biologist. CRISPR was discovered by a bunch of microbiologists, scientists who study bacteria and viruses. In fact, much of the foundational work in CRISPR [...]
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Sickle Cell Newsletter for April 2017

By Erin Hecht On April 17, 2017 · Add Comment · In Newsletter
News First systemic evidence for safety of tPA in stroke patients with sickle cell disease https://medicalxpress.com/news/2017-04-evidence-safety-tpa-patients-sickle.html Adult patients with sickle cell disease (SCD) who experience a stroke caused by a clot (i.e., ischemic strokes or IS) can be treated safely with tissue plasminogen activator (tPA) if they qualify, report investigators at the Medical University of [...]
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Financial Aid Guides for Women from OEDB.org

By Erin Hecht On March 23, 2017 · Add Comment · In Patients and Families - Other
The American Association for University Women recently reported that 53% of women have high student loan debt just one year after graduation, compared to 39% of men. Many women also face the added difficulties of trying to go to college for the first time later in life, returning to school after long gaps of time, and attaining a degree while being a single parent. To help make college more accessible for them, college planning experts at OEDB.org developed two holistic financial aid guides specifically for women. This site breaks down available grants, scholarships, and fellowships, along with useful tips and tricks.
  • http://oedb.org/scholarships/women/
  • http://oedb.org/single-mother-grant/
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The Best Scholarship Search Platforms of 2017

By Erin Hecht On March 20, 2017 · Add Comment · In Patients and Families - Other
Every year there are a wide range of scholarships awarded to students to help finance their education. With over a million different scholarships available, for many students finding all the available scholarships can be a real challenge. So Reviews spent over 40 hours researching 17 of the most popular scholarship search platforms. They analyzed and graded them using five core metrics, including functionality, scholarship availability, quality, application tools, and additional helpful resources. You can find the resource here: http://www.reviews.com/best-scholarship-search-platforms/.
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Sickle Cell Newsletter for March 2017

By Erin Hecht On March 8, 2017 · Add Comment · In Newsletter
News   First Successful  Gene Therapy in a Patient with Sickle Cell Disease http://www.nejm.org/doi/full/10.1056/NEJMoa1609677?query=featured_home N Engl J Med 2017; 376:848-855 March 2, 2017 Sickle cell disease results from a homozygous missense mutation in the β-globin gene that causes polymerization of hemoglobin S. Gene therapy for patients with this disorder is complicated by the complex cellular [...]
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Sickle Cell Newsletter for February 2017

By Erin Hecht On February 7, 2017 · Add Comment · In Newsletter
  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 [...]
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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. The Editorial Board of the Sickle Cell Information Center manages content of the site, but is not responsible for any inaccuracies in content or links provided. In no way will the participating entities, the Editorial Board, our contributors, or any participants be held responsible for any problems that might occur, or any damage or loss sustained due to the use of information (or inadequate or incomplete information) that may be contained on the site.

 

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