Office of the Director - August 17, 2012
In response to requests from persons living with sickle cell disease, the NHLBI convened a panel of external experts to develop evidence-based guidelines for clinical management of sickle cell disease. The expert panel, which began its work in 2009, developed recommendations for the clinical management of sickle cell disease after identifying important clinical questions and conducting a systematic review of the relevant scientific evidence. The guidelines based on that evidence cover health maintenance, management of acute and chronic complications, hydroxyurea usage, and transfusion therapy.
We now invite patients, health care providers, and others to review and comment on a draft of the panel's report.
Sickle cell disease affects 80,000 to 100,000 people in the United States, the majority of whom are African Americans. For decades, the NHLBI has been at the forefront of sickle cell disease research, treatment, and education. The results of NHLBI-supported research have led to new and improved methods of treatment that have not only extended the lives of individuals with sickle cell disease but also improved the quality of their lives.
The public comment period, which began on August 10, 2012, is your opportunity to let us know what you think of the draft report. It will remain open until August 31, 2012.
Please visit www.nhlbi.nih.gov/health-pro/guidelines/sickle-cell-disease-guidelines to access a copy and contribute your comments.
Once the review period has closed, the NHLBI will provide the comments to the expert panel for its consideration and prepare for release of the final guidelines in late 2012. The NHLBI will then convene multiple stakeholders to ensure that the guidelines are available and presented in ways useful to those living with sickle cell disease and those involved in any way in their care.
We are greatly pleased that the nation's health care providers will soon have guidelines for the treatment and management of sickle cell disease that reflect the latest scientific findings. We believe that the guidelines will help to transform the treatment and care of those who live with sickle cell disease.
Living With and Managing Sickle Cell Disease (Tiffany)05/27/2011
This video—presented by the National Heart, Lung, and Blood Institute, part of the National Institutes of Health—shows how Tiffany, a mother and student, has coped with having sickle cell disease. Born with the most severe form of sickle cell disease, sickle cell anemia, Tiffany has lived with the symptoms and complications of this disease her entire life.
After giving birth to her daughter, Tiffany became very sick and was admitted to the hospital many times. In 2009, she began treatment with a medicine called hydroxyurea. Although Tiffany's brother had taken hydroxyurea and had many side effects, Tiffany has had success with the treatment. Her commitment to following her treatment plan and living a healthy lifestyle have helped her manage sickle cell anemia and live a happy, full life.
For more information about living with and managing sickle cell disease, go to the Health Topics Sickle Cell Anemia article.