There isn't enough awareness about sickle cell trait – and that's a problem

You’ve probably heard about sickle cell disease – but you might not know what sickle cell trait is. Even if you have it yourself.

Sickle cell trait (SCT) isn’t technically a disease, it means you’re a carrier of the disease – and you are unlikely to experience the severe symptoms seen with sickle cell – but there are risk factors and too many people aren’t even aware of their sickle cell status.

Sickle cell disease is an inherited condition that affects the red blood cells. It’s particularly common in people with African or Caribbean heritage and attacks can cause debilitating pain and long-term organ damage.

SCT means that you have inherited the genetic abnormality that causes sickle cell disease from one of your parents. It doesn’t mean you have the disease – as you would have to have inherited it from both parents – but you could pass on the trait to your own child.

I found out I had sickle cell trait when I was 18 and I had just given blood for the first time.

My reward for the most selfless act teenage me had ever undertaken was a terrifying letter in the post explaining that I had sickle cell trait and that it ‘shouldn’t’ impact my quality of life or lifespan.

I was baffled to be honest. And a follow up appointment with my GP did little to clarify things. I was given some vague advice about avoiding altitude and was sent on my way.

Somewhere along the line I must’ve been given the impression that I wasn’t allowed to give blood – a myth that was only dispelled last week when I donated for the first time since my diagnosis.

My overarching impression is that sickle cell trait isn’t entirely understood by the medical profession and as a result, confused and contradictory information is being passed down to patients.

A simple Google search will range from telling you that having SCT can be ‘just as deadly’ as sickle cell anaemia, to people with sickle cell trait can ‘live a normal life’.

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