Living with sickle cell makes it difficult to keep your health at 100% for long.
There always seems to be some kind of background illness or physical hindrance going on.
Well, there's a reason it's called 'Sickle Cell Anaemia'.
Because outside of pain, most of the symptoms you might experience are related to anaemia.
The sickle haemoglobin that makes up your red blood cells just can't keep them going for long enough. Your body tries it's best to make up for the loss, but over time the number gradually drifts down.
Looking after your general health can help your body cope better. But haemoglobin levels in sickle cell are largely driven by the activity of the disease itself.
As haemoglobin gradually decreases, warning signs appear.
Here are 7 that you need to be able to recognise:
Feeling winded doing things that normally feel manageable. Walking upstairs suddenly feels like a workout.
Standing up and feeling the room spin. Needing to sit back down quickly.
Persistent or new headaches that feel different from your usual pattern.
Struggling to focus. Forgetting simple things. Feeling mentally slower than usual.
Becoming more aware of your heartbeat. It may feel faster or heavier than normal.
Hands and feet colder than everyone else’s. Wanting extra layers when others feel fine.
For darker skin tones this is more noticeable in the palms, nail beds, or inside the lower eyelids.
Haemoglobin carries oxygen.
When levels drop, your body receives less oxygen.
This results in:
Understanding and recognising these signs are important for everyone with sickle cell. Even more so for parents of children with sickle cell.
Children might not say they feel short of breath or declare any of the signs. But you'll still be able to observe those signs if you're aware.
If you notice more of these signs than usual, don’t ignore them.
Check in with your team. Ask about bloods. Trust your instincts.
Understanding what your body is telling you is one of the most powerful forms of self-advocacy.
