I nearly died as my body burned itself from the inside out – after mistaking life-threatening disorder for insect bites
A YOUNG woman who confused a life-threatening disorder for insect bites has told how she is lucky to be alive after her body burned itself from the inside out.
Bethan Paley thought she had been bitten by midges but soon fell ill with ulcers, toothache and cold sores.
Doctors advised the 22-year-old to visit A&E, and a week later she was diagnosed with a rare skin disorder.
Bethan, from North Yorkshire was told she had Stevens-Johnson syndrome which causes the skin to blister.
She was put on a ventilator in intensive care and her parents were told to prepare for the worst.
Miraculously, Bethan pulled through and shocked medics, and she is now sharing her harrowing experiences after finally coming to terms with her life-threatening condition.
What is Stevens-Johnson syndrome?
STEVENS-Johnson syndrome is a skin disorder usually caused by an adverse reaction to medications or an infection.
The syndrome is named after the two doctors who described in the 20th century.
It leads to the peeling and blistering of the skin, surfaces of the eyes, mouth and throat.
The soft layer of tissue that lines the digestive system from the mouth to the anus, as well as the reproductive organs, known as the mucus membrane are usually affected.
In children, it’s usually triggered by a viral infection such as mumps and flu, and less commonly bacterial infections.
For adults, it tends to be an adverse reaction to medication.
Those with a viral infection, a weakened immune system or a family history of Stevens-Johnson syndrome are at higher risk of developing the disorder.
What are the symptoms?
Before the symptoms start, many people report feeling generally unwell with flu-like symptoms such as a headache, joint pain and a cough.
After a few days a rash appears – which may look like a circular target – with a darker spot in the middle and lighter around the outside.
It’s not usually itchy and will spread over a number of hours of days before large blisters then develop on the skin, leaving painful sores.
Facial swelling and swollen lips covered in crusty sores are also a common feature.
The mucus membrane inside the mouth and throat may become blistered making it hard to swallow and lead to serious problems with dehydration.
The surface of the eyes can sometimes be affected, which if not treated quickly can caused corneal ulcers.
Bethan, who lives in Skipton, said it’s been hard coming to terms with what happened.
“When I started getting all of the symptoms, I read up about Stevens-Johnson syndrome because I was aware that it was a reaction to the depression medication I was taking.
“I knew it could be life threatening but I just had a few cold sores and blisters so I thought to go to the doctors to actually find out what it was.
“Everything progressed so quickly from that point – I ended up being unable to eat or drink and the rashes and blisters were spreading on my body.
“I was put into the ICU and onto a ventilator because I kept getting worse – my skin wasn’t as badly affected as my insides were, it was more my lungs and intestines which made my case so life-threatening.
“The doctors told my parents they were really worried and that I probably wouldn’t make it.”
Back in August 2018, Bethan noticed some marks on her body that looked like insect bites.
She had also started to experience toothache and her dentist gave her medication to relieve the pain.
I was put on a ventilator and was panicking that I was going to die
Bethan Paley
Soon after that she started to get cold sores and ulcers.
Bethan knew that her depression medication could trigger Stevens-Johnson syndrome and went to the doctors.
She was then rushed to A&E the following day as the rash spread across her body.
Bethan said it was at this point that she started to “freak out” because she knew it was getting worse.
“I was officially diagnosed a week after my symptoms started and was transferred to a bigger hospital to a burns unit – it was really scary.
“The rashes were like third degree burn blisters and my skin was falling off.
“I was put on a ventilator and was panicking that I was going to die.
“My family were distraught – my mum said it was really difficult to see me like that and she wrote a diary during my time in ICU saying how worried she was that things progressed so fast.”
Bethan spent five weeks on a ventilator before doctors fitted a tracheostomy tube in her neck to wean her off the machine.
Soon the reaction was often and doctors were shocked at how well Bethan had pulled through.
Bethan said: “An ICU nurse went on holiday and came back when I recovered and said to my mum that she was amazed I was still here because they all thought I was one that might not go home in the end.
“Recovery was really hard at first and I’d say I’m still recovering now because I’ll have some of the after effects for the rest of my life.
“My hair and nails fell out because my body was essentially burning itself from the inside out and I hated it because I’ve always taken pride in my hair.
“Eventually I shaved my head so it could start growing back. I’m only now at a length I feel more comfortable with.”
The condition still affects Bethan’s lungs and eyes – she is no longer able to produce tears, so she has to use artificial drops every half hour.
She is now coming to terms with her condition and has plans to go to university to study performing arts.
Bethan added: “It’s been very difficult but I’d say I’m in the best place now that I’ve been in the past two years.
“I now know I’m lucky to be alive and I have a different perspective on life.
“Even though it is so rare I think people should be aware of the symptoms so that they can stop whatever’s causing it straight away and get help.”