The problem with Sickle Cell is that it’s a bit too complicated and most people don’t understand how it works. So here are a few basic facts from you might want to know.
[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]
1. You can’t “catch” Sickle Cell
Sickle Cell Disease (also known as Sickle Cell Disorder or Anaemia) is not contagious. Repeat, you can not catch it. It’s passed down to a child from its parents genetically.
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 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’s no practical cure yet, but people with the disorder can live into their 50s, 60s and beyond when they manage their condition carefully. The point is, people with Sickle Cell should be hopeful and their families and friends shouldn’t consign them to an early death.
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 however.
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’s normally harmless, so you’d 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!
Relax, 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. Go 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 kid has Sickle Cell Disease, the kid’s parents both have the trait, or have Sickle Cell. There are no known exceptions, despite what some men might like to believe.
11. There is no available cure for Sickle Cell Disease
There are medical treatments like Hydroxyurea but no practically available cure. Even though this is a such huge health, social and economic problem in Africa, the research and funding levels are astonishingly low. Maybe that’s because most of the people who have the condition can’t afford to pay for expensive treatments.
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, let’s treat them with the respect they deserve.
13. Sickle Cell is not a “curse”
It’s a genetic disorder not a curse. It’s serious, but people who manage their Sickle Cell Disease can live long happy lives. If anyone tries to tell you something different, they don’t know what they’re talking about.
14. People with Sickle Cell are not immune to Malaria
People with the “AS” trait have more immunity than those without, but people with full 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.