sábado, 17 de septiembre de 2016

Sickle Cell Awareness | Features | CDC

Sickle Cell Awareness | Features | CDC

Centers for Disease Control and Prevention. CDC twenty four seven. Saving Lives, Protecting People

Sickle Cell Awareness

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CDC is working to raise awareness about sickle cell disease. You can help by reading and sharing our resources, and by joining the conversation online.
September is National Sickle Cell Awareness Month. Sickle cell disease (SCD) is an inherited blood disorder that is present at birth and affects approximately 100,000 Americans. CDC is committed to studying SCD and other blood disorders in order to improve the health and care of people with these conditions.

New and Recently Updated Online Resources

  • New fact sheets have been added to the Sickle Cell Trait Toolkit, which is a collection of fact sheets about sickle cell trait.
  • The Sickle Cell Disease National Resource Directory is a listing of national agencies, specialty healthcare centers, and community-based organizations that provide services and resources for people affected by SCD. The goal of this directory is to help people find SCD services and resources. Users can search for Providers/Sickle Cell Centers, Non-Profits/Associations/Foundations, and Support Groups within their state.

 Graphic: National Sickle Cell Awareness MonthCDC Monitoring Projects

Early screening, diagnosis, and treatment have allowed people with SCD to live much longer, making now a more important time than ever to study health of people with SCD across their life course. The Sickle Cell Data Collection (SCDC) program collects health information about people with SCD to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program will help inform policy and healthcare standards that improve and extend the lives of people with SCD. Check out the program's new and improved website!

CDC's Public Health Research, Epidemiology, and Surveillance (PHRESH) program focused on three areas: monitoring, health promotion and prevention of health complications, and laboratory capacity building. The project was conducted in California, Mississippi, and Georgia, and it addressed several objectives of the"Healthy People 2020 (HP2020), Blood Disorders and Blood Safety" initiative. The information gained from PHRESH serves as a model for national and international agencies to address the developing needs of people living with SCD, thalassemia, and other blood disorders.
The Transfusions Complications Monitoring project is a collaboration between CDC, Georgia State University, University of Florida, and the UCSF Benioff Children's Hospital Oakland that aims to identify ways to decrease health problems from blood transfusions , and to show that reducing these problems improves overall health for patients. The project's ultimate goal is to improve the quality and length of life for people with SCD, thalassemia, and other red blood cell disorders.

Public Health Grand Rounds

Save the date! The November 15, 2016 session of Public Health Grand Rounds will focus on the Sickle Cell Data Collection program. Stay tuned for more information!

What You Can Do

Spread the word! We encourage you to share our new resources with your friends and colleagues. We will be sharing messages about National Sickle Cell Awareness Month on Twitter. We invite you to follow, re-post, and re-tweet @CDC_NCBDDD! For more information about SCD, please visit the Sickle Cell Disease website.

Rachel's Story

As a child, I spent a lot of time in and out of hospitals, and was limited in the activities I could do because of my sickle cell disease. I now receive full blood exchanges every six-to-eight weeks, in which new blood is pumped in as my old sickle blood is pumped out of my body. I receive this preventive measure because of my age (45) and other sickle cell-related concerns. While I still get sick from time to time, the crises are not as severe. I am pleased that the full blood exchange procedures work and I can lead a full life—a life that involves me working a full-time job; enjoying spending quality time with my family and loved ones; traveling to exotic places; and simply participating in life.

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