By Molly Pennington
THIS MUM spent twelve hours A DAY soaking her skin in the bath after topical steroid withdrawal left her looking like a “burn victim” feeling suicidal and unable to hug her children – until an expert told her to beat the condition by doing the exact opposite and NEVER bath.
Janelle Harris (63), a retired company director from Colorado, USA, used steroid creams, foams, salves, pills, shots and even a steroid tape that slowly released steroids into her skin to control her severe eczema for 57 years.
She was left with red and inflamed skin all over her body which often oozed or cracked, and her lips swelled and peeled. Her skin would constantly bleed, and she even suffered hair loss and
The pain was so severe that she couldn’t even hug her husband, children, and grandchildren.
Janelle stopped steroids in 2014 when she felt they were no longer working and spent the next five years battling the agonising symptoms of topical steroid withdrawal.
Topical steroid withdrawal, or TSW, is a reaction that occurs when an individual ceases steroid use after a prolonged period.
Janelle’s agonising pain even left her feeling suicidal, until she made contact with an expert who advocated No Moisture Therapy, where patients reduce or even stop bathing entirely and reduce the amount of water they consume to one or two litres a day, included water consumed in foods.
Janelle began to follow the more moderate practice of Moisture Withdrawal, where she limits contact with moisture on her skin by avoiding bathing and lotions, which, after ten months, finally helped her get in control of her TSW.
“During the five-year journey, there were three times that I seriously wanted to leave this Earth,” Janelle said.
“The pain and suffering became too much to bear.
“Thankfully, my husband pulled me from the wreckage each time, reminding me of the love I have for my family and my grandchildren.”
Janelle’s eczema was present from birth, with her mother even suggesting that they “left the hospital with steroid creams”.
“As a child, I was constantly ridiculed about my skin by my siblings and kids at school,” Janelle said.
“My mom had to make me separate meals due to ‘food allergies,’ so I was labelled as spoiled when in fact I felt ridiculed and alone. My mom tells me my hands at two years old looked like a little old lady’s hands.
“I was a cheerleader and I always hated having to wear short skirts because of eczema on the back of my leg.
“I was also a gymnast but I had to quit because I reacted to the powder we used on the uneven bars, and my skin reacted when sweating.
“As an adult, I was mostly able to hide the eczema and constantly put strong steroid salves on my eyes at night to avoid breakouts on the advice of my doctor.
“I later learned you should NEVER put topical steroids on your face.”
Janelle recalled how she felt “embarrassed”, “ugly”, and “lonely” during her journey with her skin, but expressed extreme gratitude towards her husband and children for their support.
“I’ve always been embarrassed by my skin, and during TSW it was horrific,” Janelle said.
“At times I looked like a burn victim.
“The hardest part was when little kids would look at me with fear in their eyes. I must have looked like a monster.
“However, my sweet grandchildren saw past it, which was so heartwarming.
“My biggest support came from my husband who lived through the daily hell and was always there for me, bringing me food in the bathtub when I’d spent ten to twelve hours soaking away the pain, always listening and being patient during my many meltdowns and supporting every path I chose during the withdrawal.
“I know this whole ordeal had to be heavy on my mom’s heart.
“She’d tell me, ‘I never knew what they had me put on your skin, I wish I knew more.'”
It was Janelle’s mother and her children who suggested that she seek help from Dr Rapaport, an expert dermatologist based out of California, USA.
Seeing Dr Rapaport was the first step toward Janelle’s healing. After seeing him for a year, she moved on to natural healing modalities and feels that this is what mostly helped her heal.
“Dr Rapaport put me on Hydroxyzine, Cyclosporine, Ambien, Gabapentin,” Janelle said.
“I was on them for a short period of time because I felt they were not doing any good.
“I lived in the bathtub for the first three and a half years, then on January the 10th 2022, the last time I wanted to end my life, my husband suggested I try No Moisture Therapy or NMT. He had seen it in the caregivers group he was in.
“I don’t follow the guidelines of NMT to a tee. I do more Moisture Withdrawal or MW, where I stopped bathing and using any lotion or oil on my skin.
“I use body cleaning cloths that contain silver and pull bacteria from the skin to clean my body and I wash my hair in the sink.
“Although it was hard and painful at first, my skin began drying up and healing.
“Listen to your body, listen to your skin, it wants to heal from this hell and continually covering it with lotions and water may not be the best thing.”
Janelle has made an almost complete recovery and is slowly learning to embrace her skin.
“When you are constantly hiding from the world because you are embarrassed and feel ugly, self-love is something you never learn,” she said.
“At 63 years old and after enduring 5 years of TSW hell, I am finally working on that.
“Now that I’m healed, I’m embracing my skin, I tell it every day how much I love it and how beautiful it has become.”
TSW is a condition that is still not recognised or acknowledged by many in the medical field, a fact that Janelle is determined to challenge.
She is now also on the Board of Directors for the International Topical Steroid Awareness Network, a non-profit organization supporting “TSW Warriors” around the world.
“I need to help make a difference,” Janelle said.
“This madness needs to stop.
“We advocate, educate, raise awareness, and provide support for our global community that live with and care for Eczema and Topical Steroid Withdrawal.
“I also am a wellness advocate for an essential oil company and love helping people with their health and wellness.
“I became a Reiki Master and Medical Intuitive during my five-year TSW journey.
“I’ve learned so much over my lifetime, especially the last five years, and I like the person I’ve become on the other side of TSW.”