Sickle Cell Association (Antigua & Barbuda) Inc. (SCAAB)

The Sickle Cell Association of Antigua and Barbuda (formerly ABSCA) is a non-profit organization dedicated to improving the lives of Sickle Cell patients and their families. SCAAB is a small organization of about 20 members, many of whom have first-hand experience with SCD, be it as a parent or as a patient.

SCAAB’s president, Dr. Edda Hadeed, is a pediatrician and neonatologist who has been a member of the organization since 2013. Dr. Hadeed manages children with SCD on a regular basis and collaborates with renowned experts and organizations around the world.

Our Mission

We work to improve the lives of Sickle Cell patients and their families in as many ways as possible: medically, personally and on a nation-wide level. Our goals are:

• to improve care for patients

• to lend support to patients and families

• to educate patients, health care providers and general public about Sickle Cell Disease and its management

• to increase public awareness regarding Sickle Cell Disease

• to increase public awareness regarding carrier status and testing in order to prevent the birth of more affected children.

• to establish a statistic data base

• to establish a Sickle Cell Clinic

Our organization relies entirely on donations and fundraisers. Any help is sincerely appreciated.

What is Sickle Cell Disease?

Sickle cell disease (SCD) is an inherited, potentially incapacitating blood disorder. it is prevalent not only in the Caribbean and the African-American region, but also in the Mediterranean, the Middle East and India. Patients with sickle cell disease go through episodes of excruciating pain due to blockage of small blood vessels. Long-term complications can affect any organ, ranging from visual impairment to kidney damage or stroke. Patients are also susceptible to severe infections. Early diagnosis and proper care can prevent suffering and handicap. Special emphasis needs to be placed on adequate pain management. Pain crises need to be treated promptly and efficiently, since delay or insufficient pain treatment worsens the “sickling” and, in turn, pain and organ damage.

How do you get Sickle Cell Disease?

Sickle Cell Disease is an abnormality of the hemoglobin (for short: Hb). Hb is the oxygen-binding protein inside the red blood cells. The normal hemoglobin is called HbA. There are several abnormal hemoglobins, but in this context, the important ones are HbS and HbC. We inherit from our parents, which hemoglobin we produce.

A healthy person inherits a normal gene from each of his parents, each coding for HbA. This person produces only normal hemoglobin. His test result reads HbAA.

Trait Carriers are persons who have inherited one normal gene coding for HbA and one abnormal gene coding for HbS (or HbC). Their test result will read HbAS (or HbAC). They produce normal and abnormal hemoglobin.

People who carry the Sickle Cell Trait can pass on the sickle gene to their children. People with the Sickle Cell Trait do not know that they carry one sickle gene, unless they get tested, because this carrier status does not cause any symptoms. If two partners both have the Sickle Cell Trait or if one has the Sickle Cell Trait (HbAS) and the other one has the Hemoglobin C Trait (HbAC), then each of their children has a 25% risk of being born with Sickle Cell Disease (HbSS or HbSC).

A person who inherited two genes coding for HbS (or one coding for HbS and one coding for HbC), tests HbSS (or HbSC) and has Sickle Cell Disease. He or she cannot produce any normal hemoglobin.

What problems can Sickle Cell patients experience?

Problems are most often due to the red blood cells’ tendency to shred fast (anemia) or to their tendency to “sickle”, thus blocking the flow of blood and oxygen to the tissue (vaso-occlusive crisis or VOC)Complications can affect any part of the body and include anemia, painful crises, splenic sequestration, stroke, acute chest syndrome, priapism, infections, kidney damage, visual impairment and more. It is important that patients speak with their doctor about these, so that

they are able to recognize warning signs early in order to prevent organ damage.

Disease-modifying treatments

Hydroxyurea is an established treatment which works well for many patients –though not for everybody. Nowadays, it should be routinely offered to patients with classic Sickle Cell Anemia (HbSS). Data for Hydroxyurea in HbSC Disease are still lacking. For these patients, it is being used under specific circumstances. New medications have been approved recently. Unfortunately, the cost for these is prohibitive for patients in our setting.

Is there a permanent cure?

At present, the only established permanent cure for SCD is a bone marrow transplant. This means, the patient’s bone marrow needs to be destroyed with chemo therapy and/ or radiation, after which he receives bone marrow from a donor. The procedure is still difficult, very expensive and has its risks. Studies are underway trying to reduce the preparatory regimen. Gene therapy is emerging, but still experimental at this point.