Nothing could have prepared me for yesterday.
In all my 16 months of withdrawing, I had yet to meet another sufferer like myself. I have spoken to many online, sharing our stories and our journey through this nightmare, but never once had I met someone face to face.
That’s not to say the offer has never been on the table. I have had many chances to meet with others who are suffering but the timing was never right.
While here in England, a mother of a TSW sufferer contacted me. She lives 45 minutes away from my in-laws. When she spoke to me about her son, I knew this was it – this was the first warrior I needed to meet.
This is Morgan.
He is 6 years old. Before being welcomed into their home, Morgan’s mother, Dana, shared with me a bit of their struggle. You see, not only is Morgan suffering through TSW, but is also battling with a life threatening kidney disorder called Nephrotic Syndrome.
At such a young age, I could only imagine how awful that must be on Morgan. I couldn’t wait to be able to go over and cheer him up. I was excited and nervous all at the same time.
Once we arrived, Dana greeted my husband and me with open arms. She immediately took us into Morgan’s empty room, explaining that he was in the living room. She showed us a lot of the Avene products they brought back with them from France where Morgan had received treatment at their healing center (hydrotherapy), as well as their trusted vacuum. I remember vividly having to hoover everyday when my skin was shedding so badly. It didn’t surprise me that they kept the vacuum as close as I had.
What I wasn’t ready for was Morgan to enter the room. I thought I was, but I truly wasn’t. Dana warned us of his state, physically and mentally. I thought to myself, I’ve been through the early months of hell, I know I can handle seeing him. I know what it feels like.
The gorgeous smile you see in the picture above is not the same face that came waltzing into the room. My heart sank.
There in front of me stood a brave and exhausted little boy. His entire body was in the thick of Topical Steroid Withdrawal. He was incessantly itching, his entire body crimson red along with oozing and crusting on his handsome face. I could tell he was trying so hard to be strong, but the emotional turmoil Morgan has experienced was eating away at him.
“Make it stop! I hate this!” *grunts and screams* Angry outbursts make a normal appearance in their home. Dana expressed how it is so hard hearing some of Morgan’s thoughts. They have tried so many different ways of coping including care givers and a range of varying therapies.
I barely had any words. I desperately in that moment wished I could have traded places with him, even if it was for just a day, so he could feel some relief. He tried showing me his Lego collection, playing with his Lego caravan only to be set into another itching fit.
His father, Paul, changed Morgan’s shirt for the third time that day, the oozing on his chest constantly soaking his clothes.
I could smell the ooze, remembering my own all those nights my face stuck to my pillow or my clothes clinging to the wet parts of my skin.
What a juxtaposition — as Morgan wails in agony with Dana, Paul is off entertaining their youngest son, Jenson, who laughs innocently out in the hall.
As my husband and I are ushered graciously into their living room for tea and cake, all I could think about was how Morgan’s outward suffering, the screams, the cries of despair, are what many adult sufferers go through yet are old enough to control those emotions (sometimes). I know this because I have felt it. Perhaps not to the extent of Morgan who has undergone so much trauma in his short life, but that burning and that unfathomable itch can drive us over the edge. It tightens your chest, sending you into a spiral-black out state. Nothing can soothe you or calm you down. You shut out the world. Internally, I would cuss and shout and damn everything and everyone who didn’t know what I was going through. This darling boy was just verbally letting it out, constantly in this state of pain.
While my husband and I spoke with Dana and Paul, both tag teaming to check on Morgan, I was in awe of them. They are a power couple. Their strength and tenacity through this is unmatchable. You never know how strong you are until being strong is the only thing you’ve got left. I was deeply impressed with how, even through all their struggles, they continue to raise awareness about his Nephrotic Syndrome as well as his battle with TSW. They are literally between a rock and a hard place. On one hand, Morgan is desperately trying to withdrawal from being overprescribed topical steroids, but then also has to be on 10mg of oral steroids every other day to keep his kidneys functioning.
How powerful are these drugs — used to save your life as well as be toxic enough to make you so ill.
By the time we left, Morgan was finally able to fall asleep. We didn’t want to wake him, Dana telling us he barely got any sleep that night (which is not uncommon). His sleep patterns are all over, as well as his body temperature regulation. Dana allowed me to quickly touch his back and Morgan was a sauna.
This is the only picture I was able to get:
Morgan does not like to have his picture taken, and I don’t blame him. I still cringe at the thought of being photographed and I am doing well in my healing process. The only reason I ever took pictures at that stage was for awareness purposes. I rarely ever took photos for personal reasons.
I feel super honored to have met Morgan and am moved by this family’s ability to keep fighting on through this uphill battle.
How on earth some doctors and dermatologists still don’t believe in steroid-induced eczema (Red Skin Syndrome), I still don’t know. This is NOT normal eczema. Topical steroid abuse prevention and steroid education needs to be a top priority in dermatologist studies, especially since that is the go to drug for eczema. It needs to be etched into medical books that overuse has severe consequences.
This family should not have to watch their wonderful, loving child go through this. Morgan should not have to go through this. None of us should have to go through this.
If you’d like to follow Morgan’s journey, please check out his Facebook page:
His family has poured their heart and soul into this. Support is vital during Topical Steroid Withdrawal, and I am so glad Morgan is surrounded by so much of it.
Love, B. R. Wren