I remember the of middle winter.
I was sat freezing in my room, submerged in a massive woollen hoody, absorbing the last bit of heat from my hot water bottle.
I thought there was nothing worse than being cold...
So when the warrior I was speaking to told me they were relocating from South Florida because it was 'too hot', it took me a moment to appreciate the issue.
But as I now sit melting in the middle of this heatwave in the UK I feel the issue on a visceral level.
Most of us with sickle cell are trained to fear the cold, wrap up warm, avoid the chill, you know the drill.
But heat?
It rarely gets a mention. And right now, with the UK in the middle of a heatwave, the subject demands attention.
Why heat is a trigger
Sickle cell is triggered by extreme temperatures, not just cold ones.
Heat puts real strain on your body:
All while you're sweating and losing fluid. That's why everyone feels sluggish in the heat. Your body is working overtime to keep you cool.
For some sickle cell warriors, that extra strain can be enough to tip things into a crisis.
There's also a hidden mechanism: sweating doesn't just lose you water, it loses you salts.
And when your body's salt levels drop, water can actually be pulled out of your red blood cells. This a gives the sickle haemoglobin inside a bigger opportunity to mess things up for us.
What not to do
Don't suddenly pour gallons of water down your throat after forgetting to drink all day, or after you feel a twinge of pain.
Too much water too quickly can dilute your body's salts too much and make you unwell.
Not too mention your body might straight up reject the ridiculous amount and projectile vomit it all back up. Trust me. Been there done that.
What to actually do
Drink consistently through the day, not just when thirsty. Adults should aim for around 3-4 Litres total. (100- 135 ounces)
Choose drinks with electrolytes when you're sweating - coconut water is a great natural option, or a sports drink. This can hydrate your red blood cells better than water alone.
For babies, oral rehydration sachets (like Dioralyte) work well.
When to seek help
Watch for two different warning signs:
1) Heat stroke symptoms: Confusion, dizziness, a high temperature, a fast heartbeat, or skin that's hot and clammy (or stopped sweating altogether).
2) Typical crisis pain that isn't settling with your usual medication.
Either of these, especially after time in the heat, means it's time for medical attention, not home management.
Heat is an ongoing trigger - the longer you stay in it, the more it works against you. In hospital they can cool you down properly, rehydrate you and treat things early, before they escalate.
Stay cool out there.
Lewis
