Myths — Sickle Cell Education Series

#1 Myth: Sickle Cell Disease only affects black people

Fact: Sickle Cell Disease (SCD) is most common in people of African and Caribbean descent, but it can also affect those of Middle Eastern, Mediterranean, Central and South American, and Asian Indian heritage.

#2 Myth: Sickle Cell Disease is contagious.

Fact: SCD is a genetic disorder, and you cannot catch it from someone else. It is inherited when a child receives two copies of the abnormal hemoglobin gene, one from each parent.

#3 Myth: People with Sickle Cell Disease can't live a normal life.

Fact: While SCD can be a challenging condition, with proper medical care, many individuals with SCD can lead productive and fulfilling lives.

#4 Myth: Sickle Cell Disease only affects red blood cells.

Fact: Although SCD primarily affects red blood cells, it can also impact other organs, including the spleen, kidneys, and liver, due to the complications that may arise.

#5 Myth: Sickle Cell Disease is the same for everyone.

Fact: There are several types of SCD, with varying severity and symptoms. The most common form is Sickle Cell Anemia (HbSS), but other types include Hemoglobin SC Disease (HbSC) and Hemoglobin S-beta Thalassemia (HbS-beta).

#6 Myth: Sickle Cell Trait is a milder form of Sickle Cell Disease.

Fact: Sickle Cell Trait (SCT) is not a form of SCD. People with SCT carry one abnormal hemoglobin gene and one normal gene. They typically do not exhibit symptoms or complications of SCD, but they can pass the abnormal gene to their children.

#7 Myth: Sickle Cell Disease only causes pain crises.

Fact: While pain crises are a common symptom of SCD, the condition can also lead to other complications, such as anemia, infections, stroke, and organ damage.

#8 Myth: People with Sickle Cell Disease are lazy or exaggerating their pain.

Fact: Individuals with SCD may experience severe pain, fatigue, and other symptoms that can be debilitating. These symptoms are genuine and should not be dismissed or minimised.

#9 Myth: Sickle Cell Disease is a childhood disease.

Fact: Although SCD symptoms often appear in childhood, it is a lifelong condition that requires ongoing management and care throughout adulthood.

#10 Myth: There is no treatment for Sickle Cell Disease.

Fact: While there is no cure for SCD, there are treatments that can help manage symptoms, prevent complications, and improve the quality of life for individuals with the condition. These may include pain medications, blood transfusions, hydroxyurea, and in some cases, stem cell or bone marrow transplantation.

#11 Myth: Women with Sickle Cell Disease cannot have children.

Fact: Women with SCD can become pregnant and have children, but they may face an increased risk of complications during pregnancy. Careful monitoring and specialised care can help ensure the health of both the mother and baby.

#12 Myth: Sickle Cell Disease only affects physical health.

Fact: The challenges and complications of SCD can also impact a person's mental health, leading to anxiety, depression, or stress. Addressing these issues is an essential aspect of comprehensive care for those with SCD.

#13 Myth: People with Sickle Cell Disease should avoid all physical activity.

Fact: While strenuous exercise may sometimes trigger a pain crisis, moderate physical activity can be beneficial for individuals with SCD. Exercise can help improve overall health, cardiovascular fitness, and emotional well-being. It is important to consult a healthcare professional to determine the appropriate level of activity.

#14 Myth: All children with Sickle Cell Disease will have a short life expectancy.

Fact: Advances in medical care and treatments have significantly improved the life expectancy of individuals with SCD. Many people with the disease are now living into their 80’s or older. Early diagnosis, ongoing medical care, and lifestyle modifications can contribute to a better quality of life and longer life expectancy.

#15 Myth: People with Sickle Cell Disease always need blood transfusions.

Fact: Although blood transfusions can be an important treatment for some individuals with SCD, not everyone requires them. Transfusions are typically used to treat or prevent specific complications, such as severe anemia or stroke. The need for transfusions will depend on the severity of the disease and the individual's overall health.

#16 Myth: If you have sickle cell disease, you cannot be with a partner who has sickle cell trait as you are not compatible.

Fact: Depending on eligibility for NHS care and treatment, someone with sickle cell disease and a partner with sickle cell trait can have pre-implantation diagnostics carried out on the embryo to guarantee a child who would be a carrier.

#17 Myth: People with Sickle Cell Disease are protected from malaria

Fact: People with Sickle Cell Disease are more SUCEPTIBLE to Malaria and have far worse complications due to the infection. Sickle Cell Trait/Carriers have greater protection than the average population but still require prophylaxis and treatment

Knowledge empowers communities, dismantles stigma, and paves the way for improved care, research, and ultimately, a better quality of life for individuals with SCD.