Help Evie get life changing treatment

Hi I’m Evie! Thanks so much for coming to my TSW GoFundMe page.

I have been silently fighting a very debilitating condition called Topical Steroid Withdrawal since March 2022 and it has quite literally turned my life upside down. I was bed bound for a month over Christmas, and in May this year I went into a full-on flare that forced me to put my career and life on hold for the foreseeable future.

Topical Steroid Withdrawal, to put it simply, is a chronic condition that is caused by a medical dependence on steroids that are prescribed by your GP for eczema/psoriasis treatment.

I only ever had eczema in manageable patches on the front of my elbows and backs of my knees, however in a space of 6 years this changed to head-to-toe flares that were so debilitating at times I couldn’t walk. Little did I know at the time, these flares were NOT eczema, but were caused by my body becoming addicted to steroids, the very treatment I had been given for the ‘eczema’. My life started slowly crashing down.

As you can see from the pictures, my body from head to toe is dry, inflamed and broken. The agony of the flares is indescribable and makes even the simplest of tasks like sleeping, walking or leaving the house, nearly impossible. The itchiness is bone-deep and constant, and there’s not a minute that goes by that I am not uncomfortable. I’ve also experienced swelling, hair loss, shivering/sweating, insomnia, chronic fatigue, infections and open, weepy sores.

But the mental side for me has been just as debilitating. For a long time I was in denial that this was happening, trying to push through and fight for my career. For context, some of these pictures were taken just days after an acting job, or in-between posting comedy sketches, I was determined to get better and for nobody to need to know what was happening. The realities of pursuing a career as an actor and having a chronic skin condition became too much and in May 2023 I decided I had no choice but to take a considerable break to heal from this horrific condition.

ITSAN is a charity supporting individuals with TSW. They have defined the condition as “Topical Steroid Withdrawal Syndrome is characterized by red, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments. Topical steroids are effective for a short period of time to treat skin conditions. As time passes, however, applying topical steroids results in less and less clearing.” (ITSAN, 2023).

Despite thousands of people suffering with this condition, there is still a long way to go in terms of awareness, and because of that there is not currently treatment available for me in the NHS. I have tried everything possible over the past 7 years (and I really mean everything, even mouldy goats milk lol) and have considered every single option, my entire focus has been desperately trying to get my life back and it’s been exhausting at times.

For context, I had non-severe eczema as a child which was barely noticeable and unproblematic and burnt out on it’s own. As a teenager I experienced asthma problems and was often given oral steroids to treat it. By the age of 17 my asthma improved, however within a couple of months of weaning off the steroids I noticed an unusual rash on the cheeks of my face. My GP assured me it was eczema and gave me a low potent steroid cream to treat, but once it was gone it would soon come back worse. This pattern repeated over and over until my GPs/Dermatologists ran out of options to try and my body was well and truly addicted to this drug.

In early May, some research led me to discover TSW and I finally woke up and realised what was happening. My confidence in the healthcare system shattered, and I decided to stop all the drugs, and endure whatever was to come until my body could heal. It’s been hell, and has tested me in ways I could never have imagined, but I finally have a chance to get my life back.

There is a treatment available called Cold Atmospheric Plasma Therapy, with only 3 clinics available in the world; the UK, Thailand and Singapore. Unfortunately, the UK clinic has frozen its waiting list due to being inundated with patients which has led me to make the decision to relocate to Thailand for 6-8 months to receive the treatment there.

Cold Atmospheric Plasma Therapy is commonly used in the treatment of chronic wounds and is highly effective for those suffering from TSW. Not only that but it comes with no nasty side effects, as it naturally promotes the proliferation rate of your cells to heal themselves.

It’s been a long gruelling road for the past 7 years. I haven’t been my usual bubbly self for quite some time but I am finally feeling optimistic that there is a light at the end of this very dark tunnel. However, it comes at a cost. The length of my treatment and therefore the amount of time I will spend in Thailand depends entirely on how my body reacts to the therapy. The more sessions I have, the stronger and more repaired my body will be for returning back home.

Costs:

-Weekly treatment session for 2hrs (£183p/w)

-serum bottle (£76p/w)

I estimate that just the treatment alone will cost me around £6,000 for 6 months. Due to being unfit for work and being a freelancer I am not eligible for any financial support to help me with these funds. Please note, I am covering the flights, rent and general costs myself so any donations will be solely used towards my treatment costs. Because the number of treatments needed is hard to gauge just yet, any excess funds will be given to a charity supporting others suffering with TSW.

I cannot express how grateful I am for any support at all you can give, even the smallest donation or share will help me get a step closer to living my life again. There have been points where I wondered whether I would have to give up pursuing a career as an actor, but I am determined now more than ever to heal and come back to the industry that I love. If you are an actor, you can write ‘monologue’ in your donation message and I will write you a personalised monologue for the first 20 donations - just as a little way of giving back and showing my gratitude.

Speaking up about this is the hardest thing I’ve ever had to do, but I simply cannot do this without your help. With all my heart, thank you for reading my story and for any support at all you can give to helping me live a life finally free from suffering.

Thank you all so much,

Evie x