September is National Sickle Cell Awareness Month, and in support of sickle cell patients and programs, the Virgin Islands Department of Health (DOH) seeks to increase the awareness of the disease in the territory. Sickle cell disease (SCD) is a chronic blood disorder that affects the red blood cells.
“I am so pleased to see the work that this group (V.I. Sickle Cell Foundation Parent Support Group) has done for those amongst us living with sickle cell disease. As commissioner of 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,” said DOH Commissioner Michelle S. Davis.
It 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 in order to improve the health of those who are afflicted, according to a press release issued on Wednesday by the V.I. Department of Health.
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. The Sickle Cell Data Collection (SCDC) program collects health information about people with the disease to study long-term trends in diagnosis, treatment, and healthcare access.
The invisible nature of the disease is one of the most unfortunate realities 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! For more information, contact the V.I. Department of Health’s Chronic Disease program at 718-1311.
