Donate to help Hayley recover from TSW

Hello everyone, my name is Hayley (PixieLee) and I am a young engineer and cosplayer from Perth, Australia. Over the past 2 years, my body has fought a losing battle to the effects of topical steroid withdrawal. I used to spend my time learning, building and teaching in the cosplay community, working as an engineer, being an outdoors active mum to two puppies and 3 chickens, laughing with my friends and living my life to the fullest. Unfortunately, TSW has taken that away from me, including my job and career.

❓ This fundraiser is to help me relocate to Thailand (or potentially Bali if the new clinic opens sooner) for Cold Atmospheric Plasma Therapy to treat my Topical Steroid Withdrawal and help me get my life back. This treatment currently exists in 3 places in the world and requires relocation for weekly treatments for 4-6 months and even up to 12 months.

Funds will be used for treatment, accommodation, food and transportation during my recovery.

⚕️ The condition;

Topical Steroid Withdrawal Syndrome (TSWS), also known as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), is a debilitating condition that can arise from the use of topical steroids to treat a skin problem, such as eczema. This condition can also arise from topical steroid use in individuals with no prior skin condition; such as with cosmetic use for skin bleaching or to treat acne, or in the case of caregivers who neglect to wash their hands after applying topical steroids on someone else.

Topical steroids are also called topical corticosteroids, glucocorticosteroids, and cortisone. They come in many different preparations including creams, ointments, oils, gels, and lotions. Some are sold over-the-counter; others require a doctor’s prescription.

️ The symptoms;

• Skin flushing bright red, resembling a sunburn

• Visible and measurable flaking of skin – appears to be ‘snowing’

• Oozing exudate

• Skin cycling between oozing, swelling, burning, and flaking

• Red sleeves: (arms/legs become red and inflamed, sparing palms/soles)

• Thermoregulation altered (feeling too cold or too hot)

• Hypersensitivity of the skin to water, movement, moisturizer, fabrics, temperature, etc.

• Nerve pain, sometimes described as “sparklers” or “zingers”

• Enlarged lymph nodes

• Edema

• Eye dryness and irritation

• Skin atrophy (often manifesting as “elephant wrinkles“)

• Hair loss: (head and/or body)

• Insomnia and altered body clock

• Appetite changes

• Fatigue

• Emotional fluctuations, depression, anxiety

My story;

Over the past 2 years my "mild eczema" increased exponentially in severity from occasional small patches on my eyelids and elbow creases, to a full body red inflamed rash. I felt something was off and didn't believe it was eczema. I went to specialists, naturopaths, gynecologist, dermatologists. I was tested for every disease under the sun. "It's autoimmune" "it's birth control" "it's food intolerances" "it's allergies" "it's internal damage".

In the end I was put on heavy immunosuppressants, ciclosporin (meant for organ transplants), rinvoq, more steroids, oral and topical, double dose, triple dose. I was told I would be on medication forever. My asthma worsened, I developed food intolerances I've never had, I spent thousands of dollars searching for answers and the dermatologists all told me "my eczema was just worsening".

At some point, you seek your own answers.

I came across thousands of people across the world struggling with topical steroid withdrawal. Many of whom their increases and increases in steroid severity eventually stopped working. And they all end up in the same boat. In pain, withdrawing from the very drug they were prescribed to treat often a mild original condition.

For more information, please visit these websites:

#️⃣ ITSAN (International Topical Steroid Awareness Network)

#️⃣ National Eczema Society - Topical Steroid Awareness

#️⃣ Royal Australian College of General Practitionera - Topical Steroid Withdrawal

Thank you for reading this far.

Thank you for your support.

And thank you for helping me get my life back.