A young woman who suffered an extremely rare, near-fatal reaction to a medicine says it was terrifying not knowing whether she would ever fully recover.
Charlotte Gilmour, 23, spent a month in Palmerston North Hospital being treated for Stevens-Johnson syndrome, which affects fewer than one-in-a-million people globally.
She had been battling a chest infection for a month when she woke up one morning with a strange rash and what she thought was conjunctivitis.
"I looked in the mirror and I just burst into tears. I think I subconsciously knew it was something quite serious."
Her GP immediately diagnosed her with Stevens-Johnson syndrome - an extremely rare allergic reaction to medication.
The culprit in this case was lamotrigine, which Charlotte had been taking to treat depression.
Once at Palmerston North Hospital, some Filipino nurses recognised Stevens-Johnson syndrome from cases in their home country, but no-one had much information on how to treat it because it was so rare.
"It was scary, I guess, hearing... 'OK, no-one really knows a lot about this'."
Charlotte's skin developed massive blisters like she had been cooked. She needed a feeding tube because her mouth and oesophagus were burned.
"The scariest part about it is that it burned me from the inside out.
"So all the burns on the outside were because my insides were so burned that it started to manifest on the outside of my skin."
Steroids made no difference initially.
"So they stopped them, [saying] 'There's no point' and then it just got worse and worse until there was one night it got so bad I pretty much lost my vision.
"I said, 'Please, can you just try some steroids again?', and that definitely helped in the end."
After 30 days in hospital, she was discharged in November and has made a good recovery, despite a few setbacks.
"I still get blisters pop up in my eyes and the rash flares up, always in the same place where the worst burn was."
In the five years to the end of December, Medsafe received 710 reports of adverse reactions from lamotrigine, including six deaths.
The Government's drug safety agency said about one in 1000 adults, treated with lamotrigine, would develop a serious rash which could - in very rare cases - progress to Stevens-Johnson syndrome.
Those risks were higher in children taking lamotrigine for epilepsy.
Medsafe acting group manager Derek Fitzgerald said the reporting of adverse reactions was "largely in proportion" with the level of use in New Zealand.
More than 17,000 people were prescribed the drug last year for a range of conditions.
"Effective medicines, which allow people with life-threatening conditions to live close to normal lives, can often also cause severe adverse reactions in some people," he said.
"Rare, though potentially life-threatening, skin reactions such as Stevens-Johnson Syndrome, linked with lamotrigine, are related to the medicine itself rather than the brand.
"Anyone starting treatment with lamotrigine, or increasing their dose of the medicine, and who gets a rash should see their doctor right away."
More than 200 medicines are known to cause Stevens-Johnson Syndrome.
