12/21/2025
Adrenal Crisis & Duchenne – what I wish more people understood
As a mum of a child with Duchenne, one of the scariest things I’ve learned about isn’t muscle weakness or wheelchairs.
It’s adrenal crisis.
Because many boys with Duchenne take long-term steroids, their bodies can stop making enough cortisol on their own. Cortisol is a hormone we all rely on to cope with stress, illness, injury, surgery, even vomiting bugs.
Without it, the body can crash. Fast.
Most people know the common signs: • Severe tiredness
• Vomiting
• Low blood pressure
• Dizziness
• Collapse
But what really frightens me are the less talked about symptoms – the ones that are easy to miss or brush off as “he’s just unwell today”.
Some not-so-common signs of adrenal crisis can include: • Sudden mood changes – anxiety, panic, confusion, unusual quietness
• Severe headaches
• Pale, clammy or unusually cold skin
• Low blood sugar – shakiness, sweating, irritability
• Stomach pain without obvious cause
• Muscle or joint pain that seems out of proportion
• Extreme sleepiness or difficulty waking
• A sense that something is ‘just not right’ (mums know this feeling)
The analogy I always use:
Think of cortisol like the battery backup system in a house.
On a normal day, the power runs quietly in the background and you don’t think about it.
But when there’s a storm – illness, infection, injury – you need that backup to kick in.
In steroid-dependent Duchenne, that backup doesn’t switch on automatically.
And without extra steroids, the whole system can shut down.
As a mum, that means I live with a mental checklist: Do others know he needs stress-dose steroids?
Will emergency staff recognise adrenal crisis?
Will they listen if I say, “This is serious”?
Because adrenal crisis is preventable, but only if it’s recognised early and treated fast.
If you care for, teach, coach, or treat someone with Duchenne: 👉 Trust the parent
👉 Don’t wait for all the “classic” symptoms
👉 When in doubt, give steroids – they can save a life
We already carry enough fear.
Awareness can take a little of that weight away 💙
The photo was taken back in July, Joshua is fine 🙂
