On World Sickle Cell Day, Sickle Cell Warriors Takes Action to Improve Global Health Outcomes
Sickle Cell Warriors, American Society of Hematology, and other SCD partners debuts a PSA and resources library. These will 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 is an inherited, chronic blood disorder. It can cause severe pain, stroke, organ failure, and other complications, including death.
So, in support of World Sickle Cell Day, SCW, along with the ASH and other SCD partners, are taking measures. We want to raise awareness of SCD in Africa to improve health outcomes for people ranging from infancy to adulthood.
The United Nations has designated SCD as a global public health problem. 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 US, SCD continues to be a major global public health issue. It remains a major killer of infants and children in the developing world. This occurs particularly in sub-Saharan Africa, where an estimated 50–90% of infants with SCD die before their fifth birthday.
In a webinar today, “Global Action: Improving Health Outcomes for Sickle Cell Disease,” blood doctors and health experts addressed the urgent need to raise awareness about this disease. Experts discussed a recent PSA from the SCD partners aimed at raising awareness in sub-Saharan Africa. It specifically targets the need for newborn screening. It also counters the prevailing myths about the disease in the region.
Public Service Announcement
The PSA directs people to a global resources library. The library is compiled by members of the sickle cell community that identifies screening sites and other treatment centers. In African regions, they provide educational tools and resources on SCD for viewers of the video. Another video highlights efforts underway in Ghana. Ghana has a high incidence of SCD, so this helps dispel myths and eliminate the stigma of the disease. The video shows steps families can take to ensure children born with SCD are diagnosed promptly to get proper medical care. In Ghana, newborn screening and educational efforts have significantly decreased mortality rates.
In addition, 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 SCD in sub-Saharan Africa is lack of awareness of the condition and the simple, relatively cheap 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.”
Webinar Information
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 doctors dedicated to disorders affecting the blood. For more than 50 years, the Society has led blood research by promoting research, patient care, education, training, and advocacy. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, which is available weekly. In 2016, ASH launched Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.
About the Sickle Cell Disease Partnership
The mission of the 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. They also provide a platform to encourage people to work together to develop and implement important projects and activities that will help the SCD community. This will improve outcomes for individuals with the disease. The SCDC is made up 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. This will help so sickle cell warriors no longer have to deal with stigma, harsh treatment and ignorance by people around us.
Warriors
The Warrior community started with just one person (a sickle cell SS patient, who is also an RN, advocate, and warrior, dealing with the same issues we all face). We do not use the term sickler. Instead we use Warrior. 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 because it brings people together from all walks of life, who are encouraging and ‘totally get it’. So, 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 community with over 21,000 members and an average of 15,000 unique hits daily. The largest patient run sickle cell community-based organization on Earth is SCW. Likewise, we have members from almost every single country in the world. Our web-based membership is large. This enables us to interact regularly with our community. In addition, we can gather valuable data. Likewise, we can receive quick feedback, and engage our users across multiple platforms and countries.
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.
Contact
Lisa Smith
PO Box 235973
Encinitas, California
@SickleCellWarriors
Call (510) 470-0180