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Global forum to create a safe place for members of the AD community who are recovering from Topical Steroid Withdrawal Syndrome.

Global forum to create a safe place for members of the AD community who are recovering from Topical Steroid Withdrawal Syndrome.

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molly commented on Together We Heal Forum

Hi Ryan,

The Together We Heal Forum we envision will be a safe place for individuals and parent caregivers to children who have endured the terrible physical, emotional and mental burden of living with eczema to reach out to each other, reduce isolation, and gain resources, strength and information from a community with shared experience.

At age 4 years old, my son Max was no longer dealing with classic eczema patches in the creases of his skin. His eczema was out of control, causing full body redness, rashes, nerve pain and extreme itch. We learned he had become addicted to the synthetic cortisol in topical steroid creams and he entered what would be years of terrible adverse symptoms and side effects from a treatment that was intended to bring healing. During those years of Topical Steroid Withdrawal Syndrome, we discovered ITSAN and others dealing with this condition who communicated on a forum that is not currently possible due to ITSAN’s financial constraints, but that years ago was a source of hope and well being for us and for so many families.

The conversations I had changed my life. I couldn’t ask my 4 year old son to articulate the agony of his symptoms, but I could ask a man in his 30’s in Canada, in order to understand as close to firsthand as possible the pain, the helplessness sitting in a bathtub and crying while being held and consoled by his fiancé. I could communicate with parents who would remind me to put on my oxygen mask first and to never give up. In my daily life as a caregiver, I was tethered to my son’s constant needs, nerve pain and itch and in that darkness and isolation, I did not feel alone when I knew I could reach people who cared, who understood, who persevered. I appreciated that the forum had moderators and that points of light and hope from Europe to Australia, the U.S. and beyond were there 24/7 with resources for comfort measures, finding experienced doctors, sharing medical research and strategies to ease the nerve pain and itch.

My son is almost 10 years old and has experienced tremendous physical healing. He is happy and thriving. Looking back on the hardest and darkest time of my life and his condition, I see clearly that enduring a chronic illness takes you out of every norm of life around you, from going to school, to having friends, to feeling comfortable in your body. Your state of mind needs as much care as any physical symptom. To connect, communicate and relate to others going through health challenges like ours, and with those who were further ahead of us in their stories of healing and recovery, was more than a forum, it was our beginning.

Thank you,

Jolene MacDonald, ITSAN Board Member