A 23-year-old Kiwi woman has decided to share her story after a life-threatening battle with Stevens-Johnson syndrome.
Stevens-Johnson syndrome (SJS) is a rare disorder of the skin and mucous membranes. Generally it's a reaction to medication and begins with flu-like symptoms. Patients will then break out in rashes and blisters.
Charlotte Gilmour was finally discharged from Palmerston North Hospital on Friday after a month-long stay.
Gilmour said she woke up one morning in October with a swollen eye and thought she had conjunctivitis. She then noticed a rash on her arm and went to the doctor, who told her she "couldn't rule out Stevens-Johnson-syndrome" and told Gilmour to go to the hospital.
"I went to the hospital, and Palmerston North Hospital is known for their wait times, but I was rushed straight through which was pretty scary. Straight away they put a line in me and gave me some steroids and drew a mark around the rash then waited and watched to see if it was going to spread.
"Within the next few days I was moved up into a different ward and the rash had kind of started to take over my body.
"My parents were obviously terrified and the doctors weren't able to tell my them if I was going to survive or not. So then my brother flew up from Nelson and I remember saying to mum, 'is this because I'm going to die?' I was so terrified I kept myself awake for five days because I was scared that if I went to sleep I wasn't going to wake up."
Gilmour said she was treated with steroids and it was "all about keeping me comfortable" because there isn't a specific medication to cure SJS. "It was a wait and watch sort of thing," she said.
After a week-and-a-half, Gilmour said the rash stopped spreading and started to "retract", but her arms and face were completely blistered.
"It was like my arm had been cooked, and it's still recovering now. I could also feel the bone of the top of my mouth because my gums had died.
"It attacks mucus membranes so anywhere with skin and those membranes was just brutally attacked. When it started to retract it was just a game of waiting to see when I'd be strong enough to come home.
"I was on a pain pump and a feeding tube because my throat was so swollen and there were ulcers all through my mouth."
Earlier this year Gilmour was prescribed Lamotrigine, an anti-depressant medication to stabilise her mood. She said her doctors think Lamotrigine is what caused the SJS.
According to the NHS, Stevens-Johnson syndrome is a rare side effect of the medication and is more likely to happen in the first eight weeks of starting a course.
Gilmour told 1News she had been taking Lamotrigine for two months before symptoms developed.
"When I first went on the medication, my doctor told me the risks but didn't really go into detail because I guess with any medication there's a long list of risks but you just never think it'll happen to you."
'It's changed my perspective on life completely'
Gilmour said she'd "never been so scared" for her life and that the entire experience was "terrifying".
She said since making a partial recovery and coming home from hospital her perspective on life has "completely changed".
"I'm just so grateful for the small things that I used to take for granted."
"I've never had to be so head strong in my life and when I started to get better it just put so much into perspective, and when you're in that state, you realise the small things really don't matter and life is too short for any kind of bullshit.
"You just have to go with the good things and the good people in your life will show up for you. Go with them, trust them, go with the good in life and leave the bad behind."
Gilmour says she hopes to make a full recovery but it's a long road ahead.
SHARE ME