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Together We Heal Forum

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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Please elaborate on your proposed solution to the challenge in no more than 300 words.

Chronic skin conditions can't be hidden, and the people who live with it know firsthand the true struggle of heading out into the world each day attempting to feel normal. While many dealing with AD have endured a lifelong struggle with flaky, itchy, red, and super sensitive skin, we don't always show the parts that make living with this condition the most difficult. It is lonely, exhausting, isolating and defeating to struggle with Atopic Dermatitis. And when you experience a little known complication such as Topical Steroid Withdrawal Syndrome related to AD treatment, the emotional and physical agony is only amplified. Sufferers often lose support of family members as well as medical professionals. It is a lonely uphill battle. At ITSAN, we have found that while our community members need medical support and advisement, they also seek a sense of belonging and connection. Through this grant, it is our hope to establish a dedicated online forum to reduce isolation and increase opportunities for members to engage with others who have faced similar struggles. It would be a place for a parent up in the middle of the night to read about another parent's success caring for their child, or for an individual to pose questions about their experience without having to travel many miles to share these conversations in person. The forum would also house educational resources and become a beacon of light and connection that our members deserve!

What is the name of your organization?

ITSAN (International Topical Steroid Awareness Network)

Where are you and your organization based?

Prosperity Farms, Florida

Please provide a description of your organization.

ITSAN is a non-profit organization established in 2012 as a grass-roots advocacy group to support members who have endured skin conditions such as Atopic Dermatitis and utilized topical steroids as a line of treatment. Through the application of topical steroids, the members of ITSAN have sustained a worsening condition than originally diagnosed, called Topical Steroid Withdrawal Syndrome. The mission is to provide ongoing awareness and education about this condition as well as a support forum

What is your name?

Molly Evans, Board Member

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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

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