On World Sickle Cell Day, Sickle Cell Warriors Takes Action to Improve Global Health Outcomes
Sickle Cell Warriors, with the American Society of Hematology and other Sickle Cell Disease Coalition partners, debuts a public service announcement and global resources library to help improve newborn screening and early care for children in Africa living with sickle cell disease
(Encinitas, June 19, 2018) — This year, approximately 300,000 babies around the world will be born with sickle cell disease (SCD), an inherited, chronic blood disorder which can cause severe pain, stroke, organ failure, and other complications, including death.
In support of World Sickle Cell Day, Sickle Cell Warriors, along with the American Society of Hematology (ASH) and other Sickle Cell Disease Coalition partners, are taking measures to raise awareness of SCD in Africa in an effort to improve health outcomes for people with the disease from infancy to adulthood.
The United Nations has designated SCD as a global public health problem. While simple public health measures such as newborn screening, vaccinations, and early interventions have been proven to greatly improve childhood survival in several countries, including the United States, SCD continues to be a major global public health issue. It remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa, where an estimated 50–90 percent of infants born with SCD will die before their fifth birthday.
In a webinar today, “Global Action: Improving Health Outcomes for Sickle Cell Disease,” hematologists and global health experts addressed the urgent need to raise worldwide awareness about this devastating disease. Experts also discussed a recent public service announcement from the SCD Coalition aimed at raising awareness in sub-Saharan Africa of the need for newborn screening; it also counters the prevailing myths about the disease in the region. The public service announcement directs people to a global resources library compiled by members of the Coalition that identifies screening sites and other treatment centers in African regions, as well as other educational tools and resources on SCD for viewers of the video. Another video highlights efforts underway in Ghana, a country with a high incidence of SCD, to help dispel myths and eliminate the stigma of the disease. The video shows families the steps they can take to ensure that children born with SCD are diagnosed promptly so they can get proper medical care. In Ghana, newborn screening and educational efforts have significantly decreased mortality rates.
These videos, made possible by a grant from Novartis Pharmaceuticals, can be found and shared at http://scdcoalition.org/global.
“One of the greatest hurdles we face in curbing the heartbreaking rate of mortality caused by sickle cell disease in sub-Saharan Africa is lack of awareness of the condition and the simple, relatively inexpensive interventions that can save lives. It starts with early recognition, ideally through newborn screening,” said ASH President Alexis A. Thompson, MD, MPH, of the Ann and Robert H. Lurie Children’s Hospital of Chicago. “Our hope is that by using these videos to dispel myths and tell parents that SCD is manageable, we can encourage families, communities and public officials to screen newborn children for sickle cell disease so that they can receive critical, accessible treatment that will help them survive.”
To access the June 19 webinar, “Global Action: Improving Health Outcomes for Sickle Cell Disease,” please click here.
About the American Society of Hematology (ASH)
The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 50 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, which is available weekly in print and online. In 2016, ASH launched Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.
About the Sickle Cell Disease Coalition
The mission of the Sickle Cell Disease Coalition (SCDC) (www.scdcoalition.org) is to amplify the voice of the SCD community, promote awareness, and improve outcomes for individuals with SCD. The SCDC is focused on promoting research, clinical care, education, training, and advocacy while providing a platform to encourage stakeholders to work together to develop and implement important projects and activities that will ultimately help the SCD community and improve outcomes for individuals with the disease. The SCDC is comprised of over 60 leading patient advocacy groups, public health, research, and provider organizations, federal agencies, industry stakeholders, and foundations with an interest in SCD.
About Sickle Cell Warriors
Sickle Cell Warriors, Inc. is a non-profit charitable organization dedicated to education, empowerment, and awareness about sickle cell disease. Our website is located at https://sicklecellwarriors.com. Our mission is to inspire those affected by sickle cell and educate the public on sickle cell disease. As of this minute, you are no longer alone. You have us—and we have you. Welcome to the warrior family.
Sickle Cell Warriors, Inc., is a dynamic group of families, patients and caregivers who have been dealing with all types of sickle cell. The message of this group is that we are not sufferers to be pitied, but we are survivors. We seek to break the silence of sickle cell, and share our story on how sickle cell has affected us. We plan to change the face of sickle cell, and bring a new layer of humanity to the world so that sickle cell warriors no longer have to deal with stigma, harsh treatment and ignorance by people around us.
The Warrior community started with just one person (a sickle cell SS patient, who is also an RN, passionate advocate, and warrior, dealing with the same issues we all face). We use the term Warrior over sickler because sickle cell patients are strong individuals who face difficult challenges brought on by this genetic condition, but manage to survive, and in most cases thrive. There are many aspects to sickle cell disease that most people deal with but didn’t realize it was because of sickle cell, or couldn’t relate to another person going through the same thing. This community is unique in its ability to bring people together from all walks of life, who are supportive, encouraging and ‘totally get it’. Each member is walking a mile in your shoes, each connected by our DNA sequence.
Over the last 9 years, SCW has grown into a dynamic community with over 21,000 members and an average of 15,000 unique hits daily. We are the largest patient-run sickle cell community-based organization on Earth and have members from almost every single country in the world. We are predominantly web-based. This gives us the ability to interact regularly with our community, gather valuable intel, receive almost-instant feedback, and engage our users across multiple platforms, countries, and demographics.
We have several projects, classes, and events throughout the year that focus on our core mission pillars. Most notably the Advocacy Training Program, Mentorship Program, Warriors Annual Gathering (in July of every year), and our collection of classes and challenges geared toward educating our community. We also have several strategic partners, sponsors, and events throughout the year in various cities across the world.
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