Sickle Cell Screening
Please contact the office of the Sickle Cell Foundation at 850-222-2355 for a personal interview.
We seek to make everyone aware of sickle cell anemia, its cause, and the impact on our clients, families and the entire community. To have everyone know the difference between sickle cell trait and sickle cell anemia and to teach our communities how the sickling gene is detected and who should have a sickle cell test.
We were concerned because so much of what the public heard and read about sickle cell conditions was inaccurate, misleading, and unduly alarming. There was very little information to help clients and families to understand sickle cell disease. Nothing was being done to motivate people of childbearing age (fifteen to forty-four) to voluntarily seek sickle cell testing. Influential people in our community, who touched the lives of patients, were not sufficiently knowledgeable about sickle cell conditions and the services that clients might need.
We began by telling the sickle cell story so that everyone would know about the way sickle cell anemia is inherited and how it affects clients. We ordered written and visual sickle cell educational materials about sickle cell conditions and made them available to the public and professionals. We took our educational materials into the community. Our information packets are mailed, distributed at health fairs, in libraries, community centers, schools and colleges, churches and other places where people gather. We used local newspapers, radio and television programs to help dispel myths about sickle cell disease and to tell the public about programs and services available at the Sickle Cell Foundation, Inc. We also have taken advantage of every opportunity to present the facts about sickle cell conditions to group audiences. We have talked to social clubs, neighborhood organizations, community services agency staff, health care and social services professionals, school personnel, students and parent/teacher groups. We continue to educate the community on the sickle cell facts.
We establish an environment in which clients are free to explore their feelings and personal problems related to sickle cell disease with others who have a unique understanding of the issues. To provide a forum in which clients can give and receive support from their peers.
Individuals with similar interests, concerns or problems can network, share information, coping mechanisms, and generate resources that contribute to the growth and success of the individual members and the group.
We established a peer support group called the “Defier’s Club” which meets the fourth Friday of each month at noon. This support group provides discussions about the way sickle cell anemia affects them, members share their feelings and experiences and give and receive information about mutual interests, concerns and problems. The scope of the discussion is determined by group members, rather than professional staff. When an issue warrants more attention, the group invites a representative from the relevant agency or organization to attend the meetings and address their concerns.
We provide free sickle cell screenings for everyone interested in knowing their hemoglobin status; to identify persons of childbearing age who have sickle cell trait and to provide them with an opportunity to obtain detailed and accurate information which will enable them to make informed decisions that they believe are in their best interest regarding family planning.
Routine physical examinations seldom include sickle cell testing, so the vast majority of African Americans, age twelve to forty-four, have never had a test. Since sickle cell trait is not the disease and does not affect personal health, a simple, painless blood test is the only way people can find out whether or not they are carriers of a trait and have the potential for having children with sickle cell anemia. If African American couples do not know that they have sickle cell trait they can have children with sickle cell anemia without having an opportunity to make decisions about this possibility or to be prepared to take care of a child with a chronic illness.
We provide financial assistance with prescription medication for sickle cell related illnesses to clients who cannot afford it.
Sickle cell anemia is a devastating disease that requires lengthy hospital stays, as a result in many cases clients are often unable to remain employed. Most sickle cell adults are either uninsured and/or receive limited government assistance insurance (Medicaid, Medicare, SSI, or etc.). This means that clients are unable to pay for their prescription medications.
We provide transportation for sickle cell related doctor and emergency room visits for clients who have no other means of transportation, since sickle cell clients are often unable to attend doctor’s appointments or get to the emergency room when painful episode occur or after heavy medications.
The Foundation provides limited financial assistance with the following utilities: utilities or gas, rent, food, gas mileage and children’s clothing. The client must have a financial need and meet the income eligibility criteria to qualify for assistance.
We provided free sickle cell screenings and counseling at convenient times and locations for interested persons. Today we still provide free testing and counseling at the Foundation.
The Sickle Cell Foundation, Inc. gives children with sickle cell anemia an opportunity to spend time away from their normal environment and in the company of children who do not have a chronic illness at a residential summer camp.
Children with a chronic illness such as sickle cell anemia are sometimes overprotected by their parents and not given an opportunity to develop confidence in themselves and their ability to function independently. This can cause the child to grow up to be a dependent adult, unable to take charge of his or her life. Children who do not have a chronic disease have many opportunities to learn to function without parental supervision and to develop confidence in themselves. We believe that children with sickle cell anemia should have these same opportunities.
Each year the Sickle Cell Foundation, Inc. gives children with sickle cell disease an opportunity to attend summer camp. Our children follow the camp activity guidelines and have a lot of fun. Other family members are welcome to participate.