Yesterday

In 1910, Sickle Cell Disease was first identified by Dr. James B. Herrick. Since then, public awareness of the disease has grown slowly but steadily as medical studies have revealed more about sickle cell, particularly sickle cell anemia, the most common form of the disease. With burgeoning public interest in the 1960's, state and federal governments began to pour more money into both research and screenings which took place primarily in Black communities. That interest has subsided today.

In the past eight-and-a-half decades, we have learned that Sickle Cell Disease is hereditary; non-contagious; and may cause frequent attacks of pain, anemia, susceptibility to infection and myriad other serious conditions. Although Sickle Cell Disease is often associated with children, patients can live to a very old age with the disease. Medical researchers have also discovered that a parent with the Sickle Cell trait does not have the disease; he or she is simply the carrier who passes the disease on, usually without experiencing any of the severe symptoms of Sickle Cell Disease.

In 1983, the Sickle Cell Disease Association of America/Connecticut Chapter, Inc. was organized to support people living with Sickle Cell Disease and their families through services like research, advocacy, and education. Over the past 15 years, we have added a number of vital services to our roster including our Nutrition Supplement Program, Patient Financial Assistance, Counseling, and Community Education. We also provide education for professionals - including teachers, social workers, doctors, and other educational, social and medical professionals - who work with sickle cell patients. We have become a premier resource for people with Sickle Cell Disease and a source of continuing education and information to Connecticut residents wishing to learn more about the disease.

Today

The numbers associated with Sickle Cell Disease are dismaying: one in 10 African Americans carries the genetic trait and one in 400 has the disease. Additionally, one in 25 Hispanics carries the genetic trait and one in 1,000 has the disease. Too little is still known about the disease, and we have a long way to go when it comes to both educating the general public and supporting people living with the disease through the many associated emotional and physical conditions.

Today, the Sickle Cell Disease Association of America/Connecticut Chapter, Inc., continues to grow in its advocacy. With over 350,000 Connecticut residents belonging to ethnic groups at risk for some form of Sickle Cell Disease, we are reaching out to all affected groups including people from Saudi Arabia, India, the Caribbean, Puerto Rico, Greece, Iran, Turkey, Egypt, Italy and Sicily. We have developed programs to support these people and are working to disseminate information about the disease and our services.

To better serve the entire state, we have opened a satellite office at the Hill Health Center's Dixwell facility, New Haven, and have plans to further expand into the New London and Fairfield County areas where we have identified clear needs for expanded services. We also conduct extensive fund-raising efforts to support our continuing mission; speak at area corporations, churches and schools; and participate in health fairs throughout the state.

Tomorrow

Here, at the Sickle Cell Disease Association of America/Connecticut Chapter, Inc., we'd love to put ourselves out of business! That would mean a cure and the kind of pervasive support for families living with Sickle Cell Disease we constantly promote. And, indeed, some predict that a cure may be found in the next quarter century. Hope is growing as researchers continue to make strides, and a combination of medicine, lifestyle changes, and counseling makes life easier for people with Sickle Cell Disease.

In the past year alone, researchers and medical professionals have made welcome progress in specific areas like preventing a first stroke in children with sickle cell anemia by blood transfusions, easing pain through new medications, performing bone marrow transplantations, and gene therapy. Universities and health centers all over the nation are constantly conducting tests and working on these and similar initiatives. At the same time, the health care industry - and the world in general - is becoming more aware of and sensitive to the emotional and spiritual needs of families living with sickle cell disease.

Meanwhile, we will continue to expand geographically in Connecticut, and strengthen our initiative to focus more on adolescent and adults living with Sickle Cell Disease.

So, while we wait for a cure, we continue to work to educate, support, serve, and advocate for Connecticut residents living with Sickle Cell Disease.