September is National Sickle Cell Awareness Month. In support of Sickle Cell patients and programs, the Virgin Islands Department of Health (DOH) seeks to increase the awareness of Sickle Cell Disease in the Territory; the Sickle Cell disease (SCD) is a chronic blood disorder that affects the red blood cells. The effects of the disease reach far into many households throughout the USVI. Virgin Islanders have suffered with the Sickle Cell disease for generations.
Department of Health Commissioner, Michelle S. Davis, takes this time to praise the continuous work of the Virgin Islands Sickle Cell Foundation Parent Support Group, “I am so pleased to see the work that this group has done for those amongst us living with Sickle Cell disease. As Commissioner of the Health for the Territory, I have tasked our Chronic Disease program director to focus on Sickle Cell this upcoming year and in doing so, we will be hosting a conference in the near future and will be spending quality time teaching practitioners, families and the public more about this silent disease.”
Sickle cell disease is an inherited blood disorder that is present at birth and affects approximately 100,000 Americans. The Centers for Disease Control and Prevention (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.
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
The invisible nature of Sickle Cell disease is, regrettably, one of the most unfortunate realities of the life of a sickle cell patient. There are still some medical providers who tend to misjudge patients and their symptoms because they don’t ‘look’ like their pain level is maxing out at a “10” (on the pain scale commonly used in many hospitals and doctors’ offices). Some doctors and/or nurses go as far as to question whether the patient’s pain is even real! Care givers have such an important role in the quality of life for each of us who suffer with Sickle Cell Disease.
The Virgin Islands Department of Health will continue to work hand in hand with our federal partners at the CDC to bring more awareness, and reduce the numbers of Virgin Islanders living with this disease.
For more information please contact the Virgin Islands Department of Health’s Chronic Disease program at 340-718-1311.