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Life was fantastic for Nikki Collins, 31, who had a job she loved as retail manager for a pet store chain – where she also coordinated a cat re-homing service – a boyfriend, a busy social life, and even did some modeling for fun.
But all that changed in June 2018, when she picked up ringworm, a fungal infection, from a rescue cat and developed Stevens-Johnson syndrome (SJS) – caused by an unpredictable adverse reaction to medication or infection, which is regarded by the NHS as a "medical emergency."
Breaking out in blisters all over her body that peeled away leaving a burn-like wound, Nikki, who moved from Durham in north east England to Sydney, Australia, after traveling there at the age of 18, said:
"I was frightened and really stressed."
"I went from working in a demanding job I loved and having a social life and a boyfriend to becoming bedridden and not having the energy to do anything.
"It felt like, overnight, all my old life had been taken away."
Now single and living with her domestic short-haired cat Tom, Nikki remembers seeing the doctor when her skin first erupted.
Coincidentally, her GP had a mild form of the same rare condition and was able to diagnose SJS, which can be fatal and which, according to NHS advice, should be treated in intensive care or a burn unit.
Now an Australian citizen, Nikki was initially treated in Royal Prince Alfred Hospital in Sydney, where she spent eight days, before being released on bed rest.
She was readmitted to hospital in March 2019, following another reaction, where she spent a couple of weeks having biopsies done and having the burns treated, making sure the dressings were kept clean.
"Because it was such a slow onset I initially just went to the GP, who referred me to a dermatologist," said Nikki, "There was lots of back and forth, while symptoms were worsening."
"When a diagnosis was finally given, I had been treated by the outpatient clinic, having the burns dressed."
She continued:
"Because it took so long to get a diagnosis the first time, I spent eight days in hospital, before being released to go home on bed rest. The second time that I had a reaction, I was readmitted to hospital and spent a couple of weeks there."
"There were a few biopsies done of the damaged skin, comparing the normal skin to see what reactions were happening, and I had standard treatment to get rid of the dead skin, treat the burns, and make sure the dressings were repeatedly kept clean. They showed me how to do it myself at home before they discharged me."
While there is no cure or prevention for her condition and symptoms can flare up again at any time, as her body has a severe allergic reaction to medication, she feels lucky to be alive.
When her symptoms were at their worst, however, in September 2018, even going food shopping was an ordeal, as Nikki says she was treated "like a leper," even though her condition is not contagious.
She recalled:
"One time, when I finally built up the courage and strength to go to the supermarket to get groceries, while my skin was severely splotchy and peeling but there were no longer any open sores, people not only stared, but they actually moved away from me."
"When I queued at the checkout, everyone waiting behind me stood as far back as possible, not wanting to put their own groceries on the conveyor belt next to mine."
She continued:
"Eventually, an older lady from a different checkout line came up to me to ask me what was wrong with my skin. She also asked if I was contagious."
“I could understand the concern, but I felt humiliated that people were treating me like some kind of contaminated monster."
Although Nikki had blisters covering most of her body when SJS first struck, they were not painful.
But this all changed when they burst after a week, as the skin peeled down to the lower levels, containing the blood capillaries and nerve endings, causing bleeding, open sores, and considerable pain.
"I've been stuck on bed rest for the best part of two years, which has been horrible, too," Nikki continued.
"I had to set alarms for every few hours to wake me up, so I could gently rotate ever so slightly, to reduce the risk of any burns bleeding through the dressings and sticking to the bed sheets."
To support #RareDiseaseDay tomorrow, we will be presenting a series of rare and orphan conditions. Stevens-Johnson… https://t.co/fxyqAQPKKg— Health Explore (@Health Explore)1582882715.0
She added:
"It was very gross and I ruined so many sets of fitted sheets. But I like to make light of the situation and say that I was like a rotisserie chicken!"
“I would tell people that I was a method actor and I was getting ready for my role in 'Walking Dead'. I tried to make light of it, especially when I did not know what was wrong."
Having SJS prevents Nikki's body from regulating its temperature, so she also has to avoid the sun and anywhere she might over-heat.
And it causes severe fatigue, vision and hearing problems, meaning Nikki had to quit the job she loved and cannot work at present, so she is in "crippling debt."
She explained:
"At first, I was still working and putting on a happy face, pretending nothing was wrong."
“But I'd have to go to the toilet during my break, because a blister on my leg, say, would burst and start bleeding through my trousers."
She added:
"It was so stressful having to hide the fact that my body was physically falling apart at that time, but I was sad I had to stop work, because it was the best job ever."
“Who wouldn't love going to work at a place where you get to play with people's pets because they can bring them into the store?"
“And sadly, while I had to stop work, the bills didn't stop coming."
Determined to restore some normality to her life, just before Christmas Nikki tried to return to work, taking a job with a smaller company, but it did not last.
She said:
"I've had to stop again, because I don't have the energy I had before I was sick."
"I am still struggling financially, though. I had to take a loan to pay my bills and then had to use my credit cards, so I am in a lot of debt."
Nikki is also in need of urgent dental work, because the burns to her mouth and throat caused acid reflux and vomiting, which in turn destroyed the enamel on her teeth.
Unable to afford the treatment, she has set up a GoFundMe page called "Please Help Me Get My Smile Back" to try and raise the $4,430 AUD ($2896 USD) she needs to fund the work privately, or she faces a two year wait to get the treatment through the health service.
Single, after she split up with her boyfriend of several months, following her diagnosis, she says dating is difficult, as SJS has shattered her confidence.
Stevens-Johnson Syndrome | Signs & Symptoms - Fever - Unexplained widespread skin pain - A red or purple skin ra… https://t.co/y34eWJ87HA— PharmaFactz (@PharmaFactz)1582546019.0
She said:
"This has to have been the loneliest and lowest I've ever felt. The mental impact of this condition is very hard."
"I can't even begin to describe how sick and tired I am of staring at the four walls of my apartment, but the thought of going out and meeting new people and trying new things makes me anxious to the point that my stomach is in knots."
She continued:
"Also, the debts I've accrued over my sick period have left me almost constantly in some state of anxiety, so I'm hardly the type of person you want to come across as when you're meeting new people."
"The one good thing is that this condition can kill you and at least I'm still alive!"
Nikki wants to raise awareness of the rare condition and hopes funding can be found to research it and find a cure.
"I would also like to acknowledge my online support group on Facebook which I owe a lot of overwhelming gratitude for the support they have shown," she said.
"Because it's such a rare illness, more often than not doctors can't give you answers, so reaching out to these people and getting answers from their experiences offers a form a relief – so you know what to expect and know that you are not going through it alone."
You can visit Nikki's GoFundMe here.