Before topical steroid withdrawal (TSW), Eli was a happy, social boy who loved Lego, adventures, gaming and being around his friends.

At just 5 months old he developed severe eczema, covering around 90% of his body. Over the next 7+ years we followed medical guidance and were prescribed a range of topical steroids, starting with hydrocortisone and quickly progressing to stronger treatments. We were under dermatology care, but we rarely saw the same clinician twice and received very mixed advice. Each time we stopped treatment, his skin would rebound badly, but we continued using steroids as directed by professionals.

We also tried other medical options, including Dupixent and methotrexate, but these were not successful for him.

Over time we began to notice new symptoms that didn’t match his original eczema: temperature dysregulation, extreme fatigue, and intense red rashes appearing shortly after stopping steroid courses.

In January 2025 he went through full topical steroid withdrawal.

Those first months were devastating:

-deep burning skin pain

-“bone-deep” itch and nerve pain

-overheating and chills

-severe insomnia

-inability to bathe due to pain

-missing most of school

From May onwards we made the difficult decision to home-educate so he could rest and heal. With gentle skincare, nervous system support, Dead Sea salt baths, red light therapy, careful nutrition, bandaging, and an enormous amount of patience and love, he slowly began to recover. For the first time in his life his skin became almost clear and he was able to enjoy parts of the summer.

In September he returned to school, but unfortunately his symptoms flared again, including insomnia and low mood. By December we were back seeking medical help. After being prescribed strong topical steroids again, he developed a staph infection and his withdrawal symptoms returned, including the burning “red skin” and nerve pain. At some points he has been surviving on just 1–2 hours of sleep a night.

By early 2026 his pain and sleep deprivation became so severe that we ended up in A&E. After many gp apps, private dermotology care to expedite refferals and long waits, we finally have an appointment in march to be seen by specialists at Bristol Children's Hospital to discuss new treatment options.

Why we are walking

We are walking 100 miles in April (220,000 steps) together to:

-raise awareness of topical steroid withdrawal

-support families going through the same thing

-turn his pain into something positive and hopeful

TSW is still not widely understood, and many children suffer in silence. We hope sharing our journey helps people recognise the signs, seek appropriate medical support, and show compassion to families facing this condition.

Most importantly, we want Eli to feel proud of what he has overcome.

Thank you

Every donation, share, and message of support means the world to us and helps shine a light on a condition that needs far more awareness and research.