A teenage girl from Sydney, Australia, had a brush with death on her birthday after suffering a one-in-a-million toxic reaction to the epilepsy medication she had just been prescribed. Danika Heron’s skin started to burn from the inside out after the epilepsy drug she took triggered an extremely rare illness — Stevens Johnson Syndrome (SJS) and TENS — Toxic Epidermal Necrolysis Syndrome — which caused severe burns to her organs and skin.
Shortly before her 19th birthday, Danika was prescribed Lamictal and Keppra — two different epilepsy medications which help control seizures. But on her 19th birthday in May, Danika’s eyes and lips became swollen and she developed a rash on her chest, which quickly spread over her entire body. Doctors initially misdiagnosed the condition as herpes and sent her home, but over the next four days, the symptoms got progressively worse.
The rare reaction caused the skin on more than half of Danika’s body to burn, blister, scab and fall off. Her lips swelled so much that they burst and she was wrapped from head to toe in bandages. Back in the hospital, Danika was diagnosed with foot-and-mouth disease, measles and chicken pox before her tests revealed that she had SJS and TENS and she was rushed to a hospital in Sydney for treatment.
Danika spent almost a month in a Sydney hospital as her entire body was covered in blisters, her mouth was fused shut and she lost the top layer of her skin on her face, chest, back and arms. She struggled to breathe and was fed through a tube as the illness ravaged her body, burning her from the inside out and causing her to vomit skin and blood.
There is no known cure for SJS or TENS and once the illness strikes there is no way to stop it, so Danika had to fight for her life as the condition ran its course. She says much of the time she spent in hospital was a blur but she is thankful to have made it out alive and is looking forward to putting it behind her. (Scroll down for the videos.)
1. Danika Heron, 19, suffered a horrific reaction to her new epilepsy medications on her birthday, which left her in hospital for three weeks and fighting for her life. She is pictured here before the horrific incident.
2. Ms. Heron was struck down with Stevens Johnson Syndrome (SJS) and TENS — Toxic Epidermal Necrolysis Syndrome — which caused severe burns to her organs and skin.
3. The conditions caused half the skin on her body to burn, scab and fall off.
4. Her eyes and lips had swollen painfully (right), she couldn’t breathe and her neck had swollen so much she couldn’t even drink.
I don’t remember a lot about the first week, I just remember I was in a lot of pain, it felt like I was on fire. It scares me as I didn’t realise how bad it was until I looked at the photos. After I left hospital my hair started falling out and my finger and toes nails did too.
I have severe dry eyes, struggle to swallow sometimes and my skin is still a bit scarred but I’m hoping that will heal in time. I’m just grateful to be here, I’m glad to be home and I’m looking forward to getting back to normal again.
I think there needs to more done to raise awareness of SJS and TENS, there needs to be more research into the condition and more training in hospitals as it’s so rare it isn’t easy to diagnose.
I think there should be warnings on medication, labels outlining the symptoms so people know what they to do if they experience any of them. It may be rare but I wouldn’t wish this condition on anybody and I think we should do everything we can to prevent people from going through what I went through.
You can learn more about Steven Johnson Syndrome and TENS at SJS Awareness.
5. As the rash spread over her body, her mother feared she wouldn’t make it through the night. There is no cure for SJS and TENS, patients are treated with fluids and pain relief like burns victims.
6. Ms. Heron’s entire body was bandaged up as her mouth fused shut and she lost the top layer of her skin on her face, chest, back and arms.
7. She survived the ordeal and is now at home recovering.
8. ‘I’m just grateful to be here, I’m glad to be home and I’m looking forward to getting back to normal again,’ Miss Heron says. She is now campaigning for warnings on medications, outlining the symptoms of SJS. Here, she is pictured with her mother Carmen Heron before being hospitalised.
Educational Journey through SJS / TENS:
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