I’m sharing harrowing photos after I was left ‘burning from the inside out’ so others don’t face my horror
AFTER giving birth to a little girl, Nicole Donald struggled with extreme mood swings.
The mum-of-three was diagnosed with bipolar disorder and placed on a range of medications, but soon, the mum noticed her lips bleeding and skin peeling.
Now, she’s shared her harrowing battle with Steven Johnson Syndrome in a bid to warn others about the side effects of common prescriptions and says she wouldn’t wish the “nightmare” on anyone.
Nicole, 26, said: “It was so excruciatingly painful – my skin felt like it was sunburnt all over, my lips and the inside of my mouth were bleeding and my eyes were burning.
“My vision started to become so blurry, I couldn’t use my phone or see my family.
“I couldn’t eat or drink as my mouth was full of ulcers and my tummy hurt so much.
“It was the scariest health battle of my life, as no one could tell me what was going to happen.
“Addison was only six months old at the time and the thought of being away from her was absolutely heartbreaking.”
Nicole claims she was switched to the new medication after experiencing frequent bouts of numb emotion, which affected her ability to feel motivated.
Although she didn’t initially have any concerns, the mum recalls alarm bells ringing two weeks later.
At first she had a high temperature and her lips started to go red.
After researching her symptoms and the medication she had been put on, she came across Steven Johnson Syndrome.
Nicole said she immediately went to the doctors, but said some medics had ‘never heard’ of the condition.
Others told her it was ‘very rare’, adding that they didn’t think her symptoms were related to the medication.
“I didn’t have any concerns as they didn’t, but looking back… I was a little naive about how serious this was.”
Over the next week, her condition deteriorated and a red rash started to spread across her entire body.
In June 2020, Nicole was taken to hospital and blood tests were performed.
However, medics were baffled by the case and couldn’t make a formal diagnosis.
It wasn’t until a new doctor observed Nicole and confirmed it was Steven Johnson Syndrome that panic started to set in.
What is Steven Johnson Syndrome and what are the symptoms?
Stevens-Johnson syndrome is a rare but serious skin reaction that's usually caused by taking certain medicines, the NHS states.
It needs to be treated immediately in hospital and is often caused by your body reacting to certain medicines.
This can include:
- epilepsy medicines
- antibiotics
- anti-inflammatory painkillers
Guidance from the NHS states that the condition can start with flu-like symptoms such as a high temperature, sore throat, cough and joint pain.
A rash appears a few days later and usually starts on the upper body before spreading to the face, arms, legs and other areas.
You can also get blisters and sores:
- on your lips and in your mouth and throat – this can make swallowing painful
- in the tube that carries pee out of your body – this can cause pain when peeing
- on your eyes – this can cause eye pain, pain when looking at bright lights and problems with your sight
Soon, she was informed that every mucus membrane in her body was blistering and burning, including her genitalia.
She said: “I remember crying and then it became too painful to cry.
“I was very nervous and it was such a scary time, but all I could do was try to be brave and fight for my little girl.
“I wasn’t too shocked, as I know every medication has side effects, but I was shocked to learn that no one knew what this condition was.”
Nicole was put on steroids and given pain relief and after two weeks her symptoms started to lessen.
Two months later, she had won the traumatic battle and the mum is hoping to raises awareness of the condition.
Nicole added: “I have had a lot of health battles in my life, but I have never had anything quite like Steven Johnson Syndrome.
“I wouldn’t wish it upon anyone.
“I’ve lost some pigment in my lips and my left eye has a permanent obvious red vein, but that’s all, so I’m very lucky.
“My advice to anyone is to be cautious with any medication and call a doctor immediately if you have any side effects, even minor ones.
“At the end of the day, a doctor prescribes medication to make you feel better, not worse, and I was so fortunate the doctor had seen this before, as I may not be here today.”