A decade ago, June 19 was officially appointed as World Sickle Cell Awareness Day. The date was chosen to mark the day the General Assembly of the United Nations began to recognize sickle cell disease (SCD) as a public health concern.
The day is an attempt to increase global awareness and understanding of the disease which is the most common hereditary hematologic disorder in the world.
According to the World Health Organization (WHO) estimates, sickle-cell anemia affects nearly 100 million people throughout the world, with over 300 000 children born every year with the condition. Unfortunately, many of these individuals will die in childhood due to lack of basic care, and those who survive into adulthood may face a life of chronic disability and premature death unless disease-modifying therapy can be provided.
In order to increase positive outcomes for people with this disease, the WHO has made a commitment to:
- Recognize that sickle cell disease is a major health issue.
- Increase awareness of the world community regarding sickle cell disease.
- Eliminate harmful and wrong prejudices associated with sickle cell disease.
- Urge member countries where sickle cell disease is a public health problem to establish health programs at the national level and operate specialized centers for sickle cell disease and facilitate access to treatment.
While there is a lot of discussion around prevention of sickle cell by discouraging couples with sickle cell trait from having children, the fact is that this disease exists presently and has to be managed. Like many other medical conditions, there are several myths and misconceptions surrounding sickle cell disease and sometimes these may be harmful to people living with this disease.
This post will attempt to address a few of these misconceptions.
1. Only Black people suffer from Sickle Cell Disease. False.
Sickle Cell Disease does not discriminate based on ethnicity or skin colour. It occurs more often among people from regions of the world where malaria is common. Millions of people from around the world are affected by this disease, especially those whose ancestors descended from sub-Saharan Africa, Saudi Arabia, India, the Mediterranean (Greece, Sicily and Turkey), and Latin countries in South and Central American.
2. Sickle Cell Disease is a contagious blood-borne disease like HIV and Hepatitis B. False.
Sickle Cell Disease is genetic condition present at birth. It is inherited when an offspring receives the sickle cell trait from both biological parents. Therefore, a child can only have Sickle Cell Disease when both of his/her parents have the abnormal hemoglobin gene. A person cannot become “infected” by the blood of someone who has Sickle Cell Disease, or who carries the sickle cell trait. SCD is not contagious. You can not get sickle cell from touching or sharing items with a person who has sickle cell disease.
3. People with the Sickle Cell Disease are immune to malaria. False.
While scientists believe that Sickle Cell Disease is an evolutionary response to malaria, people with Sickle Cell Disease do not have the benefit of this evolutionary change. Some doctors have been known to tell patients with Sickle Cell Disease that they are immune to malaria and do not require anti-malarial protection. This is not true and puts patients at a greater risk. However, there is some evidence to suggest that people who carry the sickle cell trait, but did not inherit the gene from both parents, are less likely to have severe forms of malaria and may have higher childhood survival rates.
4. All patients will die during childhood from Sickle Cell complications. False.
This is not scientifically true and varies from patient to patient. A person with SCD can live a long and high quality life. In developed countries like the United States, statistics show that up to 95% of babies born with SCD will live to be adults. People with SCD can lower their risk for complications by:
- Getting regular check ups with their doctor
- Following treatments prescribed by their doctor
- Preventing infections by taking simple steps such as regular hand washing
- Precising healthy habits like drinking 8 – 10 glasses of water daily and following a nutritious diet.
Sickle cell is a lifelong condition that can be very difficult for people with the disease and also for their families and loved ones. It is important that we all inform ourselves and not allow our misconceptions to make their lives even more difficult.
