Creating Greater Awareness of Sickle Cell Disease
In 2013, Kellyn George established the Sickle Cell Cares Foundation. Its primary mandate is to create greater awareness about the occurrence of sickle cell disease in Dominica. Secondarily, the organization’s aim is to encourage “sicklers” to be proactive in managing their health. The foundation was officially launched on June 19th, 2014; International Sickle Cell Day 2014. Kellyn is currently enrolled in the Masters of Public Health Program at the University of the West Indies, in Kingston, Jamaica, with an expected graduation date of November 2016. Previously, she successfully completed a Bachelor of Science degree in Biology at Barry University in Miami, Florida in 2010, and completed a Leading Change programme from Cambridge University in the United Kingdom in 2015. Her desire is to continue to have a greater public health impact in Dominica through her work with Sickle Cell Cares Foundation.
Kellyn’s aim was to create a place where individuals and families who suffer with sickle cell disease can find information and support. She used the foundation to share current research innovations pertaining to sickle cell disease and to encourage sickle cell sufferers to engage in healthy practices for a better and healthier lifestyle.
HOW THE OBJECTIVES WERE ACHIEVED
In February 2015, three women, each competing in Carnival Pageants, Miss Dominica Pageant, Miss Teen Dominica, and Mother’s Queen respectively, collaborated with the Foundation to develop platforms that create awareness about sickle cell disease. This was a major development for sickle cell disease in Dominica, as it created widespread discussion about the occurrence of the disease and made persons aware that there was an established organization where they could find available information.
In June 2015, the foundation successfully handed over to the Princess Margaret Hospital, main hospital on the island, a blood refrigerator that was procured through successful partnerships with other organizations. Previously, when blood was needed, it was sought by calling donors when an emergency arose. Sickle Cell patients who were suffering painful crises and in need of transfusions would have to wait for someone to donate blood in order for them to be treated.
The Sickle Cell Cares Foundation has begun a registry of individuals who have Sickle Cell Disease. This has never before been done in the country and will provide demographic and statistical information on the occurrence of sickle cell disease on the island. It is the goal of the foundation to have a better understanding of its target demographic, in an effort to better address their needs. This registry can also help guide health policies that better address the needs of persons with sickle cell disease.
In November 2015, the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia met with key stakeholders including the Ministry of Health and other NGOs in Dominica to engage in plans to develop a New-born Screening Program for Sickle Cell disease.
During the holiday season 2015, Kellyn and volunteers of the Foundation raised money to put together gift baskets to donate to a few “sicklers” on the island, to continue showing support. Slowly, sickle cell individuals are becoming engaged with the Foundation and more support is being provided.
Dominica was ravaged by the effects of Tropical Storm Erika on August 30th, 2015. Major flooding and landslides caused loss of many lives and upheaval of many families. The nation has been in a state of national recovery ever since. Plans to continue actively raising awareness had to be postponed indefinitely. Focus shifted to assisting in National Relief and Recovery efforts. Volunteers of the foundation included local fire-fighters, police officers, and other national emergency officers.
Sickle Cell disease is quite rampant in the Caribbean. It is a greater burden than initially anticipated. Although, there is some work being done to address it, much more needs to be done to make Sickle Cell disease a priority to create a source of relief for individuals in Dominica and across the wider Caribbean.