Our Journey with Psoriasis

In honor of National Psoriasis Month, one of our Mom’s is sharing her family’s journey with diagnosis and management. Thank you Heather for sharing your beautiful insight!

When I heard psoriasis, I just had a general idea about a few itchy patches that really could be pretty irritating. But, in my mind, it was just a skin condition. I had no idea how a skin condition could become all-consuming – and how highly our culture valued outward appearance.

As a family, we drove to the Grand Canyon and when we returned, we noticed our son had a few itchy patches. We chalked it up to the dry weather on our trip, but as the summer progressed, so did the spots. The patches grew to cover almost all of his body from his scalp literally down to his feet. In just six weeks he’d gone from no spots to completely covered.

We saw our pediatrician for help and she gave us a tube of steroid cream and a referral for another dermatologist. Getting into most dermatologists is quite a feat these days as they’re booked out months in advance. Best we could do was 6 weeks out. We felt so helpless lathering him in steroid cream twice a day and seeing the psoriasis only grow worse. We were also getting concerned that he was at risk of an infection as the psoriasis patches had started cracking and bleeding in places. In Texas in the summer, we felt he couldn’t swim in the rivers or run barefoot at the beach for risk of a bacterial infection, so we stayed close to home. We’d also started a gluten free diet – anything to help! Our son started voluntarily wearing pants and long-sleeved shirts (in Houston – in August!) just to keep people from asking what was wrong. We were feeling pretty discouraged – and still desperately wanting to help our son.

By the grace of God, we got a referral to a pediatric dermatologist who’d had a cancellation and could see our son. She acknowledged that the steroid cream was pretty much like spitting into the wind when it’s as extensive as it was – and how aggressively it had spread. She also helped us understand it was an immune system response – and changing environments or diets may contribute to the irritation, they weren’t the source of the psoriasis.

She prescribed medicine that would calm his immune system and helped us understand the pros/cons of the treatment – then we watched and waited. So many well-meaning friends had lamented all the negative effects from steroid creams when they asked about his obvious skin problems. I learned enough that I was wise with the people I discussed his medicines – just learning to say to most folks “we have been blessed with a wonderful dermatologist with a lot of experience and a treatment plan.” I know they meant well, they just weren’t walking in our shoes.

When school started, we did our best to keep him comfortable in his uniform with the navy shirt that showed every bit of the scaling from the psoriasis. All the sweet, curious kindergartners would circle round him on the playground and ask about his “spots.” His teacher was wonderful, letting me come clean out the scales in his desk when I was at school. We were genuinely surprised by how many of the students showed empathy and kindness to him and laughed and prayed with him over his spots.

We also started attending family events through A Children’s House for the Soul. We thought it would help our 9-year old be with kids who encountered similar struggles. What we quickly learned was that we were all impacted. We met children and families who’ve encountered lifelong issues related to skin disease – and they quickly became some of the most courageous people we knew. Our teenage daughter started talking about how much she hadn’t realized how much of her impression of others came with just a first glance – and how important it was to make that glance positive. Don’t look away – look in and smile. Our pre-teen son noticed how much he admired people who’d overcome obstacles, not just the ones who came by life with natural talent and luck.

Our youngest still has psoriasis, and we’re very grateful it’s become manageable with the medicine being quite effective. This medicine isn’t a great long-term solution so we’ll be weaning off soon – and we’ll watch and wait to see what’s next

He still gets questions about his spots and is still hesitant to go shirtless at the pool – but our family become so much more understanding of how life is a struggle for many people in our imperfect world. Kindness and connections are huge. Connecting to doctors and specialists is always a top priority, of course – as they bring clarity through their diagnostic skills and knowledge of treatment options. But connecting with other families and children who are struggling has been life-giving and given us joy along the path – even when there’s not a “cure”.

Beauty really is more than skin-deep, just takes a little more time and a different kind of soul to see it.

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