A mother-of-one thought she had leprosy after her ‘cold’ caused her to cry blood and flake off large chunks of skin.
Jo Daniels, 42, suffered ‘horrific’ blisters in her eyes, mouth, nose and gums days after she woke with cold-like symptoms last February.
Convinced she was dying, Ms Daniels, of Llanelli, Carmarthenshire, was later diagnosed with the rare condition Stevens-Johnson syndrome.
Despite being prescribed antibiotics, it took three weeks before Ms Daniels’ ulcers began to heal, with large chunks of skin flaking off into her mouth.
Although nearly recovered, Ms Daniels claims the ordeal has ‘transformed the way she looks’ by making her gums recede and leaving her eyes constantly swollen.
Ms Daniels, now too self-conscious to leave the house, battles depression and anxiety, and lives in constant fear the disease will return.
Mother-of-one Jo Daniels thought she had leprosy after her ‘cold’ caused her to cry blood and flake off large chunks of skin. Ms Daniels woke in February to find blisters in her eyes, nose, gums and lips (pictured). She was later diagnosed with Stevens-Johnson syndrome
Pictured at home before the ordeal, Ms Daniels was convinced she was dying when she experienced symptoms she had never heard of before. Doctors at Morriston Hospital, who prescribed her antibiotics and anti-viral drugs, had also never come across the condition
Ms Daniels, who is single and mother to 21-year-old Alexander, said: ‘I was convinced I was going to die. The symptoms were horrific and unlike anything I had ever heard of before.
‘It was like having severe burns across the whole of your mouth, nose and eyes and I was in constant pain, unable to eat or drink anything apart from small amounts of water.
‘At its worst, parts of my face were starting to fall away and I remember one day finding a big chunk of something in my mouth – which I then realised was a bit of the inside of my cheek that had come away. It was as though I had leprosy.’
Ms Daniels developed a cough at the beginning of this year, which she put down to the start of a cold.
But, over the next five days, she started to develop large ulcers in her mouth, as well as painful, itchy bumps around her eyes. Her GP suspected she may have measles and prescribed antibiotics.
‘I knew it wasn’t measles,’ Ms Daniels said. ‘By that stage, my symptoms were so bad I was having to swallow clots of blood that were building up in my nose and I was constantly spitting blood.
‘I was barely able to see because my eyes were bleeding. I was terrified.’
Ms Daniels then went to Morriston Hospital in nearby Swansea in March for blood tests, where she was finally diagnosed in the first case her doctors had ever seen.
Specialists believed the disease was triggered by an infection, which her immune system was reacting violently to.
The skin on Ms Daniels’ lips blistered before turning into ulcers that then fell off. She even had a large chunk of skin fall into her mouth when part of the inside of her cheek fell away. Ms Daniels relied on her mother Diane Daniels to ensure she did not choke while she slept
Ms Daniels is pictured eight months on while still recovering and suffering impaired vision
Despite being prescribed further antibiotics and anti-viral medication, Ms Daniels’ symptoms continued to get worse over the next three weeks.
‘I couldn’t leave the house or do anything at all because I couldn’t see,’ she said.
‘I tried eating soup and jelly, but it was just too painful for anything to touch the ulcers all along my mouth and throat – so I ingested nothing that whole time, except for water.’
And when the burning sores finally began to heal, a whole new set of problems set in.
‘As the skin started to get drier, big chunks of it began to come off on my lips and in my mouth. It was horrible,’ Ms Daniels said.
Ms Daniels’ blistered lips meant she was barely able to eat anything throughout the ordeal
Pictured with her cat in February before the incident, Ms Daniels says she used to be a sociable person and is now agoraphobic. She also battles depression and lives in fear of being ill again
Ms Daniels’ claims the ordeal has totally ‘transformed her looks’ with her now suffering from receding gums and puffy eyes. Her eyesight is also too bad for her to apply make-up
Worried she might choke on her own flesh, Ms Daniels was monitored by her mother Diane during the few hours of sleep she managed to get a night.
After an agonising three weeks of treatment, Ms Daniels was finally able to see and eat again.
WHAT IS STEVENS-JOHNSON SYNDROME?
Stevens-Johnson Syndrome (SJS) is a rare, serious disorder of the skin and mucous membranes.
It often begins with flu-like symptoms, followed by a painful red-purple rash that spreads and blisters.
SJS affects up to six people per million in the US. Its UK prevalence is unknown.
Other symptoms may include:
- Unexplained widespread pain
- Blistering of the skin, mouth, nose, eyes and genitals
The top layer of skin then dies and sheds.
SJS’ cause is often unclear but may be as a side effect of medication or an infection, like pneumonia.
People are more at risk if they have a weakened immune system, or a personal or family history of the disorder.
Treatment can include stopping unnecessary medications, replacing fluids, caring for wounds and taking medication to ease the pain.
Source: Mayo Clinic
But, although her blisters have nearly disappeared, she continues to suffer the physical and emotional damage of the experience.
‘My vision is now very bad because of the sores that were in my eyes,’ Ms Daniels said.
‘But, more than anything, I feel I have completely lost my confidence and my looks.
‘Anyone who hasn’t seen me since before it happened would think to themselves, “What’s happened to her?” because it has transformed the way I look.
‘Now I have bad teeth, because it made my gums recede, my eyes are nearly always swollen and I can’t put make-up on, because I can’t see well enough to.
‘I used to be a very sociable person, but I’ve been made an agoraphobic by this terrible illness.’
As well as being left anxious and depressed by the ordeal, Ms Daniels also lives in fear of being struck by Stevens-Johnson syndrome again.
‘It is so rare that there is really so little information available about it,’ she said.
‘Even medical professionals couldn’t really tell me much about it at all and I feel like I can’t sleep soundly until someone can give me some answers and let me know that this will never happen to me again.’
But despite the toll the condition has taken on her wellbeing, Ms Daniels is determined to regain the life she had before.
‘The illness has robbed me of this entire year and could well take more than that,’ she said.
‘But I have to stay determined to beat it. It’s been like going to hell – but I have to believe I’ll get out the other end.’