Dr Layan Allawi – NHS England Sickle Cell and Thalassaemia Clinical Fellow – describes her experience of carrying the sickle cell trait and its relation to sickle cell disease.

When I was young, I was told that I carried a gene of a blood condition called sickle cell disease.

At the time, I didn’t really understand what that meant. It was only years later, when I became a doctor, that I truly grasped the importance of knowing my carrier status.

Sickle cell trait vs sickle cell disease

Sickle cell disease is the most common inherited condition in the UK. It occurs when a person inherits a sickle gene from both parents.

Anyone can be born with sickle cell, but it is most common among people of Black Caribbean and Black African heritage.

If you only inherit one gene, you are said to have the sickle cell trait. This does not mean you have the disease, and for many, like me, it has little impact on my health.

Family planning

But knowing your status can make a huge difference — particularly when it comes to family planning.

I was fortunate to know my own status before deciding to have children and had my partner tested. That knowledge meant we could understand the risks of our children inheriting sickle cell disease and make informed choices.

For families who don’t know, the discovery can often come much later, such as screening during pregnancy.

One aspect I find fascinating is how the sickle gene has stood the test of time.

People with the trait have a degree of protection against a type of malaria, which meant ancient communities survived the deadly infection well before the emergence of modern medicine.

This is in profound contrast to the stigma people with sickle cell disease still face today.

The same gene that helped many of us exist at all is linked to stark inequalities, preventable complications, and, sadly, avoidable deaths.

Identification

So how do you find out if you have the sickle cell trait?

A straightforward blood test, arranged through your GP practice or local Sickle Cell Centre, will tell you your status.

It is particularly important if you are planning a family and a member of your family is affected by sickle cell disease.

Awareness

In my role as an NHS England Sickle Cell and Thalassaemia Fellow, working for the National Healthcare Inequalities Improvement Programme, I can vouch for the importance of education and the difference it makes.

My current work focuses on developing national resources for those with sickle cell and thalassaemia, including raising awareness and improving understanding about the conditions, which will be launched next year.

Even though sickle cell is the most common inherited condition, it is generally misunderstood by the public.

By raising awareness, encouraging conversations and using our influence, we can support those affected as well as challenge the inequalities that persist.

If you think you could benefit from the free NHS genetic blood test, then please contact your local GP practice or local Sickle Cell Centre to ask.

Knowing whether you have the sickle cell trait or not really matters and will make a huge difference to you and your family’s future plans.