09/09/2026
A healthy red blood cell lives for around 120 days.
With sickle cell disorder, that can be less than 20.
Think about what that means for the body.
Your bone marrow is constantly trying to replace red blood cells that are being broken down earlier than they should. And to make those new cells, your body needs raw materials.
Folate. B12. Zinc. Protein. Enough energy to keep the whole process going.
Yet how often is any of this properly explained in a ten-minute clinic appointment?
We talk a lot about managing sickle cell. We talk about medication, pain relief, hydration and what to do in a crisis.
But we don't talk nearly enough about what it takes for a body to live with sickle cell every single day.
And this matters even more when the care people receive is still so inconsistent.
The SDEC unit at the Royal London lost its funding earlier this year. Lewisham's Acute Sickle Cell Unit faces uncertainty over future funding.
Five years after the No One's Listening report, people with sickle cell are still describing very different experiences depending on which hospital they go to and sometimes even who happens to be on shift.
Then we praise people for being “resilient”.
But sometimes resilience is simply what people are forced to develop when the systems around them aren't doing enough.
This is one of the reasons I teach nutritional literacy and cellular health.
Your haematologist manages your sickle cell disorder.
My work asks a different question: What does your body need to meet the demands that sickle cell places on it, day after day?
Because when you understand what chronic haemolysis is asking of your body, you may start to understand your fatigue differently.
When you understand what your body needs to produce new red blood cells, you can ask better questions about what you're eating and whether you're getting enough.
When you understand hydration beyond simply “drink more water”, you can start noticing patterns in what your own body needs.
And when you know your baseline, you can describe what has changed.
“My pain is different.”
“My energy dropped three days ago.”
“I haven't been eating properly.”
“My sleep has changed.”
“I've been drinking the same amount, but I'm losing more fluid.”
That is useful information.
The better you understand your own patterns, the more clearly you can communicate what is happening when something changes.
None of this lets the healthcare system off the hook.
Our community still deserves better funding, better research, more consistent care and better outcomes.
Sickle Cell Awareness Month arrives every September with remarkable reliability.
The funding hasn't always shown the same consistency.
In the meantime, understanding your own body is knowledge nobody can take away from you.
