FAQ

 

1. How do you get sickle cell disease?

Sickle cell disease is not contagious. It is passed on through the genes of both parents.

2. Is sickle cell anemia a death sentence?

No. Nowadays, with the improvement of treatments, life expectancy has increased considerably. It is estimated at 50 years for men and over 60 years for women.

3. What are healthy habits for living with sickle cell disease?

• Hydration: Drink, drink, drink
• Be disciplined and keep up with your treatments and medical appointments
• Relaxing and managing stress

4. What medications are most commonly used in the management of sickle cell disease?

• Hydroxiyurea
• L-Glutamine
• Oxbryta
• Adakveo
• Penicillin

5. What is phenotyped blood, and why is it important in the care of sickle cell disease?

It is blood that is closest to the recipient’s blood type. Using phenotyped blood reduces the risk of adverse transfusion events and the development of antibodies.

6. What are the possible complications with sickle cell disease?

Necrosis, stroke at any age, heart failure, kidney failure), leg ulcers, anemia, pain crises.

7. Why is it important to know your sickle cell status?

This allows you to make informed decisions when it comes to having children. This means that you can limit the risk of having children with sickle cell disease.

8. What are the different types of sickle cell disease??

• Hemoglobin SS disease
• Hemoglobin SC disease
• Hemoglobin SB+ (beta) thalassemia
• Hemoglobin SB 0 (Beta-zero) thalassemia
• Hemoglobin SD, hemoglobin SE, and hemoglobin SO

9. Where is sickle cell anemia most prevalent in the world?
   

• Sub-Saharan Africa
• Saudi Arabia
• Caribbean
• Mediterranean
• Middle East
• South America
• Central America
• South East Asia

10. When is Sickle Cell Disease Awareness Day??

In 2008, the World Health Organization (WHO) declared June 19 as World Sickle Cell Day.

11. What is the sickle cell trait?

A person has the sickle cell trait when he or she inherits a normal hemoglobin gene (A) from one parent and an altered gene from the other (S).
The person is then said to be a carrier of the trait but is not sick.

12. Is there a cure for sickle cell disease?

Yes, the only cure is a bone marrow transplant, which has to be done with a compatible donor.

13. How can sickle cell disease affect a child’s social development?

Sickle cell disease causes many social and psychological problems that need to be addressed with adequate care and support. Issues frequently encountered include enuresis, depression, school absenteeism and deteriorating school performance.

14. How can sickle cell disease affect puberty?

Children with sickle cell disease usually grow and develop slower, even reaching puberty later than their peers. This delayed growth is due to the fact that they have fewer red blood cells. Adults with sickle cell disease are also often shorter and thinner than the general population.

15. Sickle Cell Disease and Racism

Sickle cell disease was discovered over 115 years ago and is the most common genetic blood disorder in the world. Sickle cell disease also disproportionately affects black people.

Unfortunately, research shows that the stigma and prejudice associated with the disease shortens the lives of people with sickle cell disease faster than the disease itself. Too few realize what a serious illness sickle cell disease is for families and patients.