A Georgia woman has been the victim of a severe skin condition that has left her bedbound for months and unable to feed herself.
Natalie Merchant Wright has a condition known as Topical Steroid Withdrawal (TSW) which causes ‘bone deep’ itching that can only be helped temporarily with harsh scratching, leaving her skin oozing, bloody and raw.
It started when she was just an infant and began suffering from eczema, leading her doctor to prescribe a topical steroid cream.
But over time, her body became accustomed to the steroid and it stopped working for her and in fact backfired, leaving her with symptoms causing pain so immense that showering and even moving to the bathroom was an excruciating burden.
Even though she stopped using topical steroid cream in August 2017, her painful rashes as a result of withdrawal have continued, leaving her feeling like a ‘leper’ when she goes out in public.
Natalie had been using topical steroid cream to treat her eczema since she was just an infant. TSW can come on after a person who has used the cream for a long time suddenly stops using it, sending the body into a state of withdrawal
TSW has inflicted extreme pain on Mrs Wright, who is often unwilling to leave home for fear of getting unwanted attention for her appearance.
The National Eczema Association (NEA) has said that the number of people affected by TSW is difficult to determine.
She said: ‘I work with the public in retail. They mean well but would ask things like ”oh my gosh, what’s with your skin? Why do you look like that? What happened, were you burned or in an accident?”
‘You feel horrible, diseased, like a reject and a leper half the time and people kind of treat you like that, whether or not they mean to.’
She started suffering from mild eczema at just two months old and was prescribed topical steroids to reduce inflammation caused by the skin condition.
The 20-year-old newlywed said the lotion triggered a series of flare-ups that were mistaken for eczema, which she tried everything to cure – including ‘hardcore’ bone broth fasts and eating nothing but meat for six months.
But in August 2017, the retail team leader discovered that she was suffering from topical steroid withdrawal, so hasn’t touched the lotion since.
Mrs Wright said she has endured ‘literal hell’ from the condition that causes harsh scratching and leaves the skin across her body red, raw and oozing.
She also struggles to do simple tasks like opening doors and showering as the sensation of any water touching her body is akin to getting lemon juice into a cut.
‘The kind where you cannot scratch enough and after you stop, it burns, so you want to scratch more. It’s such a Catch-22,’ she said.
‘I remember before school I’d get in there and couldn’t help but yell and cry because it was so painful… There’s times that I would lie in bed for hours just praying and would get up and give up and go and lie on my bathroom floor and cry.’
In December Natalie was forced to take medical leave from her job due to the severity of her condition, even wetting the bed on a few occasions due to lacking the strength to make it to the bathroom.
She added: ‘It wasn’t an uncommon occurrence to wake up with bloody bed sheets and my own dead skin flakes – it felt like waking up to crumbs in the bed.
‘There’s been times these last four months where it’s been so bad I’ve had to be spoon fed, which is really embarrassing – you feel so helpless.’
TSW affects the nerves, leading Mrs Wright to be hypersensitive to temperatures and textures. She said she is always either too cold or too hot.
Natalie claims she was bombarded with hundreds of questions every day asking ‘what happened?’ and mistaking her for a burn victim.
‘These super-insensitive questions, with good intentions for most of the time, are really hurtful and sometimes after 800 of those comments a day, 801 is enough to crack [you] and I’d just break down crying.’
Natalie said her symptoms weren’t as severe during her younger years but she had problematic areas, particularly her ears and elbow creases.
Due to her skin issues, Natalie said she had a hard time growing up as she wanted to feel as ‘pretty’ as her peers and in school often struggled to type and hold pencils.
Over the years there were times she didn’t want to leave the house but was forced to ‘grin and bear it’ as she needed to go to school and to work.
Natalie’s most recent flare up that started in December was her longest and most severe to date, which forced her to stop work.
She said: ‘I’ve been bedridden since December. I would leave the house about once every fortnight to get my nails done, I get super thick acrylics as it prevents me from doing so much damage when I scratch.’
Natalie’s condition causes itching that can’t be helped and leaves her with raw, bloody and oozing with open sores
Mrs Wright, a swing dancer said she tried ‘anything and everything’ to treat her skin, including making visits to a range of health experts, trying various creams, medications and supplements.
She also changed her diet by going dairy and gluten-free for five years, in a bid to cut out any food allergies.
After feeling ‘helpless’ for years, she discovered cold atmospheric plasma therapy (CAP), a treatment which is only available in the UK, Singapore and Thailand. It has provided Natalie with a light at the end of the tunnel.
Natalie and her husband Matthew Wright, 25, tied the knot on April 3rd before jetting off to Thailand four days later for the treatment and after two sessions, she’s already noticing a big difference.
She’s now set up a GoFundMe to raise $30,000 to help cover the cost of the treatment as well as their flights, visas, and living expenses while out there. She has so far raised nearly $21,500.
She said on her GoFundMe page: ‘I have suffered with this condition for over 20 years… which is long enough to make me crazy enough to fly to Thailand for treatment. I am at the point of desperation where no measure is to far. I want my life back.’
She said the results of the treatment, made specifically for TSW, will be permanent with little to no side effects. While she may still have mild skin issues, which will be more like eczema, they will be far more manageable.
She’s currently having it once a week and its duration will depend on how her skin responds.
Natalie said: ‘The treatment has been a light at the end of the tunnel. I’ve noticed quite a difference already, it’s very exciting.
‘In between every treatment I’m seeing improvements – the redness is going down and flaking is increasing, which means your body is healing and reproducing skin cells.
The treatment has improved her sleep considerably, lending her the ability to sleep almost six hours each night.
‘I think I’m going to start to look like a new woman, I cannot wait.’
She and her husband plan to live there for a year, or at least however long it takes for Natalie’s condition to improve.