Kilimanjaro for Topical Steroid Withdrawal

A LIFE-CHANGING SKIN CONDITION WITH NO AVAILABLE TREATMENT, LITTLE RESEARCH AND UNDERSTANDING. CAUSED BY WITHDRAWAL FROM THE USE OF TOPICAL STEROID CREAMS.

Hello everyone!

I have created this Go Fund Me page as I prepare to climb Kilimanjaro in March 2024.

To me, this isn’t just about conquering a mountain, it’s about conquering the challenges faced by individuals dealing with Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome. My journey has been a rollercoaster of pain, isolation and self-healing, with the outdoors playing a huge part in my therapy during recovery.

I will be covering the cost of the expedition regardless; however, I have chosen to support ITSAN, a charity close to my heart, in the hope to raise some funds through my efforts to get to the summit! Your support, whether big or small and spreading the word, will be instrumental in shattering stigma, improving knowledge and providing a better future for TSW sufferers.

85% of ITSAN's total operating expenses fund: raising awareness, providing information, extending support, and partnering with governing and medical entities for advocacy and research to bring regulatory changes.

My TSW Story –

It all began innocently with a tube of prescribed steroid cream from my GP in January 2020, to treat my small patches of eczema. Little did I know, this was the beginning of a time in my life which would test my strength and endurance in horrific ways.

TSW isn’t just a minor skin issue or "a bit of eczema". There are no words to describe it, but just try and imagine an itch that is so deep it’s touching your bones, endless nights with no sleep spent crying, bed sheets full of flakes, oozing & blood, a ballooned face, arms and legs feeling like they are on fire, so much hair loss you feel exposed, unhealthy amount of weight loss, and last but not least, severe depression. My emotional well-being plummeted, and relationships crumbled, as I didn’t recognise the person in the mirror.

Sleeping became a distant dream, I bought prescription sleeping pills from whoever I could in a desperate pursuit to get some shut-eye. The medical maze wasn’t kind, TSW is like an enigma that few recognise. Seeking help was a frustrating journey, and the lack of awareness meant I was on my own in this. People looked at me in shock, they’d ask, ‘Is that eczema?’ And when I tried to explain TSW, I was always met with a puzzled face. Amidst the confusion, there was a silver lining, the TSW community on the ITSAN Support Group pages & the beloved app, TikTok! They understood, they cheered me on, and they kept me from drowning in the storm.

It wasn’t until May 2022 when a TikToker shared their TSW journey, that I finally had a name for the chaos in my life and found myself on the ITSAN website.

The toughest part of this? Feeling like a lost a chunk of my life in my twenties – years that should’ve been filled with laughter, love, adventure and memories.

Today, I am 15 months free from steroids, and I can tell you one thing – this journey has been about so much more than just my skin. It’s been about reclaiming myself, piecing myself back together, and learning the art of healing, one day at a time. To everyone navigating the chaos of TSW, remember this: even in the darkest of moments, there’s a glimmer of light. Healing might be slow, but it’s there.

https://www.tiktok.com/@rhifay_?_t=8ersYTzi37I&_r=1

https://www.itsan.org

Thank you so much!

Rhi xx

UPDATE - Thank you so so much for all your donations, we have smashed my original target of £500!! I will also be utilising some funds to help tip the sherpa's who will be taking me up Kilimanjaro, carrying my bag, making dinner, pitching the tent and supporting me on the hike. They rely on tips from tourists to live and feed their families so I would love to help support them too as much as I can.