Hello to all our dear friends and supporters,

I'm stepping into this space today not just as Cheerry's mum but as a voice for her and many others navigating the challenging journey of Topical Steroid Withdrawal (TSW).

With Cheerry embarking on a new chapter with her part-time job starting tomorrow, she finds herself at the crossroads of managing her time between healing and her professional commitments. It's a bittersweet moment for us, as I, too, find myself on a new path. Having recently left my full-time job, I now have the opportunity, more than ever before, to dedicate my time to supporting Cheerry and to take on the mantle of sharing our journey with you, at least until I find my next job opportunity.

The road we're walking is paved with challenges, not least of which is the emotional hurdle of confronting TSW, a condition that has tested our strength and resilience in ways we never imagined. For Cheerry, even glancing at photos of her TSW flare-ups evokes a discomfort that's hard to articulate. I share this sentiment; looking at those photos reminds me of the pain and the struggle, but it also strengthens our resolve to shed light on this condition.

Creating awareness about TSW is not just about sharing our story—it's about reaching out to others who are in the midst of their battles, offering a beacon of hope and understanding. It's about breaking the silence and the stigma that too often surrounds chronic health issues.

Throughout this journey, moments of self-doubt and endless "what-ifs" have shadowed our steps. Reflecting back, my skepticism towards steroids grew, especially as they seemed ineffective despite the dermatologists' efforts to escalate their potency. Our quest for alternative treatments led us to Korea, a country we believed was at the forefront of dermatological innovation.

We went to Yonsei University Gangnam Severance Hospital, It was there we encountered Protopic (Tacrolimus), presented by a dermatologist as a safe option for facial application, its non-steroidal nature a beacon of hope. Regrettably, our relief was short-lived. We later learned the hard way that Protopic comes with its own daunting set of risks, including a withdrawal process more challenging than that of steroids, a reality that caught us entirely off guard!

We also faced difficult decisions regarding other treatments. Given Cheerry's thin veins and the invasive nature of regular blood tests required for monitoring, we shied away from Cyclosporin. The dermatologist informed us of its severe side effects, including an increased risk of infections and cancers such as lymphoma and skin cancer. The thought of trading eczema for a possibly more dire condition was a risk we could not take.

Instead, we chose to use immunosuppressants, specifically Dupixent® (Dupilumab), a biologic medication administered through subcutaneous injections, recognized for its effectiveness against various inflammatory conditions. This treatment required her to endure painful injections every two weeks for five months. Unfortunately, we discontinued the treatment as her skin only showed improvement for a week following each injection. Additionally, this regimen led to her developing conjunctivitis. She also had cataract removal surgery for both eyes due to Steroid too.

This choice marked another step in our journey, one that we’ll share more about in future segments of this newsletter.

Throughout this ordeal, Cheerry has shown incredible strength and wisdom beyond her years. She insists that I should not blame myself or our dermatologists. She believes that some of them were very caring and deeply concerned about her skin conditions; though perhaps their understanding was limited by the treatments traditionally taught for managing eczema and related conditions. We were all navigating through the unknown, with no intention for any of this to happen. Her resilience and understanding have been a beacon of hope for us both. She is not only enduring the pain but also comforting me, striving to relieve me of the burden of self-blame.

Cheerry’s determination extends beyond her personal healing. She is driven by a desire to demonstrate to doctors and dermatologists that healing from eczema can occur without steroids, aiming to pave a smoother path for others and prevent the suffering caused by TSW.

I'll be sharing our journey, focusing not only on Cheerry's experiences with TSW but also on the lessons I've learned as a caregiver. From practical advice to emotional support, I hope to offer guidance that can help other caregivers navigate this challenging path with their loved ones.

Together, let's embark on this journey of awareness, support, and healing. Your presence here means the world to us, and we're grateful for the opportunity to share our story with you.

Warmest regards,

Cheerry's Mum

W A R N I N G!!!
GRAPHIC IMAGES AHEAD.

Please refrain from scrolling further if you wish to avoid viewing images of my daughter's (TSW) skin condition.