WARNING – GRAPHIC CONTENT
Convinced she had leprosy, a woman has described her terror when, within days of waking up with cold symptoms, blood was pouring from her eyes and mouth and large chunks of her flesh were falling off.
With blisters and sores in her eyes, mouth, nose and gums, Jo Daniels, 42, was sure she was either dying or had leprosy—a contagious disease, causing disfiguring skin sores, which once saw sufferers being banished to special colonies.
But the mum-of-one, of Llanelli, Carmarthenshire, Wales, was diagnosed with Stevens-Johnson syndrome which, according to genetic experts, is a one-in-a-million, sometimes life-threatening condition, which affects the skin, mucous membrane, genitals and eyes.
Jo was not able to eat anything for three weeks while suffering with the condition (Collect/PA Real Life)
Single Jo, whose son Alexander Daniels is 21, 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.”
Jo is recovering eight months on as she still suffers from impaired eyesight (Collect/PA Real Life)
Jo’s nightmare began in February this year, when she began to cough and assumed she had a cold.
But, over the next five days, as she started to develop large ulcers inside her mouth and painful welts around her eyes, alarmed, she saw her GP, who, suspecting she had measles, gave her antibiotics and asked her to come back the following day for further tests.
“I knew it wasn’t measles, though.”
“By that stage, my symptoms were so bad that 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.”
Jo eyes are still swollen eight months on (Collect/PA Real Life)
Going to Morriston Hospital in nearby Swansea for blood tests in March, Jo was told by doctors that she had Stevens-Johnson syndrome and that it was the first case they had dealt with.
As specialists believed her case had been caused by an infection and that her immune system was reacting violently, resulting in her skin lesions, she was prescribed antibiotics and antiviral drugs.
But Jo’s symptoms continued to get worse before they got better, meaning it took three weeks before her drugs had any positive effects—in the meantime leaving her in agonising pain.
“I couldn’t leave the house or do anything at all because I couldn’t see,” said Jo, who was looked after throughout her illness by her mum Diane Daniels.
“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 for that whole time, except for water.”
But as the burning sores gradually began to heal, a whole new set of problems occurred.
The skin on Jo’s lips became ulcerated and then fell off (Collect/PA Real Life)
“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.”
Worried that she might choke on her own flesh as the inside of her mouth came away in chunks, Jo was monitored by her mum during the few hours of sleep that she managed to get each night.
Thankfully, after three weeks, her wounds began to heal and she could see and eat again.
Jo was looked after her mum who monitored her while she slept to ensure she did not choke on her own blood (Collect/PA Real Life)
But, although her blisters have nearly disappeared, she has suffered other physical and emotional damage because of her experience.
“My vision is now very bad because of the sores that were in my eyes.”
“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.”
Jo with her cat before becoming ill in February 2018 (Collect/PA Real Life)
“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 – meaning I don’t want to leave the house – by this terrible illness.”
As well as being left anxious and depressed by her ordeal, Jo also lives in fear of being struck down by Stevens-Johnson syndrome again.
“It is so rare that there is really so little information available about it.”
“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.”
However, despite the toll the condition has taken on her her physical and mental wellbeing, Jo is determined to regain the life she had before she fell ill.
Jo as she began to recover (Collect/PA Real Life)
“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 that I’ll get out the other end.”
A version of this article originally appeared on Press Association.