Desperately worried, I stayed with my girl day and night as doctors ran tests.
They eventually discovered she’d been born with a microdeletion, which meant some DNA was missing from her chromosomes.
Medication helped reduce the seizures, but she still experienced them now and again, and it was terrifying.
Stressed from Scarlett’s illness, my hands and feet continued to suffer.
Wounds and cracks appeared on my skin after the slightest touch.
I’d wear gloves to protect them, but blood would often seep through the fabric.
‘You have to see someone; it’s getting worse,’ Russell insisted.
But I was too busy with the kids to go to the doctor and although I hadn’t ever had this before, I had convinced myself everything was fine.
By now, the pain was becoming unbearable though.
Even bathing Scarlett or cleaning the house was too much. Pus would ooze from the blisters, and the tingling felt like bugs were crawling beneath my skin.
Unable to cope any longer,
I finally went to a GP.
He told me it was dermatitis and prescribed steroid cream.
But it didn’t help, and after a few more weeks of agony, I went to a dermatologist.
Within just a few seconds of glancing at my skin, he declared, ‘You have palmoplantar pustulosis (PPP), a form of psoriasis.’
He explained it was an extremely rare auto-inflammatory disease that may have been triggered from my traumatic birth with Scarlett or the stress of her seizures.
‘Okay, how do we get rid of it?’ I asked.
‘There’s no real cure, but phototherapy can sometimes help the symptoms,’ he explained.
So I went to a specialist who placed my skin under a UV light machine.
Devastatingly, it only got worse.
While a normal person’s skin will regenerate about every 30 days, mine was shedding every four to seven.
It was like having a baby had made my skin fall off!
When the infection spread to my finger and toe nails,
I wore ugg boots – even sleeping in them as it was too painful to remove them.
Walking was excruciating, and I’d shuffle across the floor, crying out in pain.
Russell had to quit his job to look after the kids, as
I spent most days in bed.
‘You’ll get better, the gunk will go away,’ little Rosie said, as she stroked my head.
It was torture. I’d been a happy, fun mum, and now I couldn’t play with the kids, or even hold Scarlett without suffering pain.
Despite the agony, I’d still do it, not wanting to miss out on that precious new baby time.
I tried every cream under the sun, desperately hoping for a miracle cure.
Crying myself to sleep at night, Russell would soothe me, saying, ‘It will go soon.’
I barely left the house and the few times I did, people would give me filthy looks when they saw my hands.
Heading online, I found alternative cures to try.
I went vegan, put oat-filled socks on my feet and soaked my limbs in vinegar.
I even considered urinating on my feet!
Back at the dermatologist, I broke down.
‘I can’t do this anymore, nothing is working,’ I cried.
This time, I was prescribed medication that’s usually given to cancer patients.
The side effects were horrendous and my hair fell out in clumps and I felt so sick.
But incredibly, after a year of pain, my skin was finally starting to clear up.
Along with the pills, I tried a natural cream called MooGoo, which soothed and relieved the soreness.
Gradually, my skin improved, and after six months of meds, I was finally back to my old self.
It felt amazing being able to play with the kids or just simply hold their hands.
‘I’m proud of you, you’re so strong,’ Russell told me.
Nowadays, I might have the odd flare up, but it’s much more under control.
Documenting my skin journey, I created an Instagram account called @aussiemum_to6, to help others with the condition.
No-one should have to go through what I did, but
I want to remind people who may be suffering that they’re not alone.
If you think you’ve got it, see a professional immediately.
I’m just so pleased that the torment is over and
I can finally focus on enjoying family life. ●
As told to Kathryn Lewsey
