Rare condition explained after woman was left in a coma and face 'fell off' following reaction to Ibuprofen
A woman whose skin ‘fell off’ after taking Ibuprofen was the unwitting sufferer of an incredibly rare condition that affects one to ten people in every million.
Aleshia Rogers, a child and education technician, had been taking the painkiller regularly after having given birth via a caesarean section in August 2020.
She allegedly took the medication twice a day after it helped with her pain and swelling.
But when flu-like symptoms started to show approximately three weeks after the 27-year-old birthed her third child Jax, it was only the beginning of what she would endure.
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Soon, there was a high fever and burning sensation when she swallowed.
Then, her eyes began to swell and burned, too.
Not long after that, a ‘small rash’ on her chest formed, leading to ER nurses to believe it was scarlet fever.
However, when blisters started forming on her face hours after returning from the emergency room, and her skin was seen to be ‘peeling off’, she was once again taken back to be examined.
This is when Rogers was diagnosed with a rare disorder, that has a five to ten percent mortality rate: Stevens-Johnson Syndrome (SJS).
What is Stevens-Johnson Syndrome?
According to the Mayo Clinic, Stevens-Johnson syndrome (SJS) ‘is a rare, serious disorder of the skin and mucous membranes’ which is usually caused by a reaction medication.
Just like Rogers experiences, it often ‘starts with flu-like symptoms, followed by a painful rash that spreads and blisters’.
From there, the top layer of affected skin dies, ‘sheds and begins to heal after several days’.
The Mayo Clinic also said that some people may suffer with painful urinating, light sensitivity, and fatigue.
But that’s not the worst she was diagnosed with.
It turns out she had developed Toxic Epidermal Necrolysis (TENS), which is the most severe form of SJS.
What is the treatment for Stevens-Johnson Syndrome?
After being transferred to the burns intensive care unit, Aleshia was placed into a medically induced coma for three weeks as her body fought against sepsis and multi-organ failure.
She also underwent a full-body skin excision and grafting because ‘95 percent’ of her skin fell off.
Rogers also had an amniotic membrane transplant (AMT) on her eyes to reduce inflammation and scarring.
For SJS, treatment typically focuses on removing the cause, caring for wounds, and controlling pain to minimize complications as the skin regrows.
It can take weeks to months to recover. If you have TEN, like Rogers, it’ll be worse.
However, life after healing requires taking a new approach to medications.
If it was caused by a reaction to a drug, you’ll have to avoid it and others like it in the future.
For Rogers, it has been a terrible journey.
After spending a month in intensive care, she recalled what the disease had taken from her.
"I had absolutely no idea what had happened to me. I forgot that I had given birth. I lost a lot of memories,” she said.
"My family told me it really was touch-and-go as to whether I'd make it through. I've been told so many times that I'm a miracle.
"It's always a thought but I live my life like tomorrow isn't promised and try not to live in fear.”
According to Rogers, doctors ‘don’t really have an explanation’ for why she developed SJS, as she had been taking Ibuprofen since she was 14.
But from now on, she needs to steer clear from it.
"There's no prevention and once it starts, there's nothing you can do to stop it. And there's definitely a chance I can get it again at any time,” she said.
Rogers still faces SJS-related complications five years on, and warned others about the dangers.
“I don't want people to be afraid of medicines, but I want people to be aware and mindful of what can happen,” she said.
Britt Jones