Woman called 'monster' by bullies after rare condition made her skin burn and hair fall out
A woman who was called a “monster” by bullies after steroid creams made her skin burn and hair fall out is finally in recovery after battling for over a decade.
Nina Ajdin, 28, of Illinois, US, was first prescribed the treatment at the age of 10 to help ease symptoms of eczema.
The creams calmed the red, scaly patches that appeared on various parts of her body in the beginning.
Bullied teen pushed to the edge
Nina experienced her first symptoms of Topical Steroid Withdrawal (TSW) aged 17, after having a break from steroids. Her hair fell out until she was completely bald and she had burning skin all over her body.
During her six years of being on and off the medication, the reactions put her in a comatose state for up to 23 hours and caused bulling by strangers who called her a “monster”, leading her to have suicidal thoughts.
She visited more than 100 doctors who could not give her a diagnosis and kept telling her to use the ointments without making the connection that they were causing the problem.
After her father finally found a video online about TSW four years ago, she decided that the best option was to go cold turkey and let the withdrawal symptoms work their course.
After dealing with even worse symptoms than before for the next few years, Nina has now had clear skin for four months and is finally starting to recover.
Hell on earth: Burning skin and oozing sores
For the first time in over a decade, she is finally starting to lead a normal life, working a customer service job and applying to degree programs in business management.
“In the beginning, the rashes would subside, but then show up somewhere else on my skin. I would then use more steroid cream. It was manageable,” Nina said.
“I went completely bald as a teenager and doctors were clueless to what was wrong.
“It looked I had third degree burns from my scalp to the soles of my feet and I couldn’t move, walk, eat or dress myself without assistance.
“It got to the point that I felt like I’d rather be dead than dealing with what I was going through.
“The most difficult part of it was the lack of awareness in the medical community. Every doctor I went to just told me to keep taking the steroids.”
In addition to the rashes and hair loss, a fluid with a foul smell was oozing from Nina’s skin during the withdrawals.
“When the oozing was really bad, I couldn’t go out at all. It just smelled like my skin was rotting away,” Nina said.
“At the worst point, I was oozing so badly that I had to sleep with five towels underneath me.”
Nina’s return to ‘normal life’
Nina is no longer ‘afraid to leave the house’ and is working. She has completed her Associates degree and is applying for Bachelors programs.
“I’m finally able to start living a normal life,” Nina said.
“I still get flares, but not nearly as bad as they used to be. I know overall my body is healing inside and out.”
As part of her recovery, Nina has also been taking Kratom, an Asian tea that is on the verge of being banned in America.
She says the natural supplement has helped her battle the depression caused by the condition and improve her mood.
Nina wants other sufferers of TSW to know that it is important to not lose hope, as she went from wanting to die to now being able to live a normal life.
“It’s crazy to think that I went from wanting to take my own life to finding a solution,” she said.
“I hope other sufferers realise that no matter how bad it gets, their life will go back to normal one day.”
