14 Things about Sickle Cell you might not know

Sickle Cell can be confusing, and most people don’t understand how it works. So here are a few basic facts from you might want to know, especially if you are Ghanaian

Healthy red blood cells are round, but the genetic defect makes them sickle shaped

Healthy red blood cells are round, but the genetic defect makes them sickle shaped

1. You can’t “catch” Sickle Cell

Sickle Cell Disease (also known as Sickle Cell Disorder or Anaemia) is not contagious. You can not catch it. It is passed down to a child from its parents genetically. This happens when both parents are "carriers" of the faulty gene – also known as having the sickle cell trait.

2. Sickle Cell is NOT a terminal disease

Sickle Cell is very painful and serious disease which can cause a range of health issues and in some cases short life expectancy. In Nigeria, some estimates suggest that 98% of children born with Sickle Cell Disease die before they’re 5 years old. However, when diagnosed early and with support, it’s also a manageable condition. There is no accessible cure yet, but people with the disorder can live into their 50s, 60s and beyond when they manage their condition carefully. People with Sickle Cell should be hopeful and their families and friends shouldn’t consign them to a short life. 

3. People with Sickle Cell trait are usually perfectly healthy carriers

People who have the genetic trait also known as “AS”, “AC” or one of the Thalassemia variant statuses, do not normally suffer any symptoms. There are some exceptions to this but it’s generally not a health issue if you carry the trait. People who have “full” Sickle Cell Disease, also referred to as SS or SC, will likely have significant health difficulties. 

4. The Sickle Cell “trait” is extremely common in Ghana and other African countries.

Some statistics say that between 20-25% of all Ghanaians and Nigerians have either the Sickle Cell trait AS or AC. Most of us don’t know we have it because it is normally harmless, so you would never be able to guess without a proper test. Some of those tests don’t look for AC, so people should specifically ask for AS, AC and Thalassemia screening.  

5. If two parents who have the Sickle Cell “Trait” have a baby, it might be born with full Sickle Cell Disease

If a mother and father have one of the Sickle Cell traits, the future child is at significant risk of being born with “full” Sickle Cell Disease. There’s a 1 in 4 chance this will happen. If you choose to take that risk, you should be prepared and speak to a doctor about treatment and testing of the child. Before having children, we recommend you ask a doctor or clinic to check your status and for them to provide genetic counselling if you carry the trait. 

6. Getting tested for Sickle Cell trait will NOT ruin your life.

If you have it, the trait doesn’t normally cause any health problems. Then you and your future partner can make informed decisions when it comes to making babies. Remember that if both parents are carriers, there is a 1 in 4 chance the baby will have full Sickle Cell Disease. There are other situations like when one parent has full ‘SS’ sickle cell and the other has ‘AS’. In those cases it’s always wise to talk to an informed, up to date doctor before having children. 

7. People with Sickle Cell are not sick all the time!

People with Sickle Cell Disease feel okay most of the time. When they have a ‘crisis’, that’s when the mis-shaped blood cells prevent enough oxygen getting around the body and the pain starts. At this stage, they often need to be admitted to hospital for treatment with pain killers, hydration and other treatments. 

8. People with Sickle Cell can live full, productive lives. 

Many successful Ghanaians in business, entertainment and government have Sickle Cell Disease. Yes, even though Sickle Cell Disease is a serious health problem, when it’s managed well, sufferers can live productive lives, have children and work. They deserve consideration from others when they’re sick, but they shouldn’t be discriminated against.

9. Don’t wait, don’t leave it too late, find out if you have the trait!

Having the trait is NOT like finding out you have a disease because there are is no suffering and it’s not contagious. You will be simply be able to make informed decisions about having kids with your future or current partner. We advise you to speak to your doctor, clinic or ask someone you trust to suggest a testing facility near to home. 

10. Sickle Cell children can ONLY be born to parents who BOTH carry the trait

That’s right, if a child has Sickle Cell Disease, that means the child's parents must both carry the trait, or have Sickle Cell Disease. There are no known exceptions, despite what some might like to believe. 

 
Diagram showing how inheritance of recessive disorders such as Sickle Cell work

Diagram showing how inheritance of recessive disorders such as Sickle Cell work

 

11. There is no available cure for Sickle Cell Disease

There are some drugs available such as Hydroxyurea and encouraging new treatments being trialled in the US, Sweden and France. However these are experimental, expensive and not yet openly available. 

12. Sickle Cell stigma is wrong.

People with Sickle Cell Disease have a tough time, they deserve admiration and support. They didn’t catch it, it happened to them before they were born. We all have friends and family with Sickle Cell Disease, we should treat them with the respect they deserve.

13. Sickle Cell is not a “curse”

Superstition is common in Ghana and many parts of the world, and our research tells us that some Ghanaians believe that having Sickle Cell Disease is the result of a curse. This is simply not true! 

14. People with Sickle Cell are not immune to Malaria

People with the “AS” trait have more immunity than those without, but people with Sickle Cell Disease have no immunity and are actually at greater risk.

15. Not only black people can have Sickle Cell

Sickle Cell is very common in Africa and amongst people of African descent. However, it’s also prevalent in the Middle East, Asia, North and Latin America.

[We’re not doctors or medical professionals. We recommend you seek professional medical advice if you think you may be affected by Sickle Cell. If you have any more suggestions to add to this list please let us know]