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.
In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.
After the last several months of this pandemic, I think we are all well-versed in how important it is to wash our hands so that we don’t spread germs. But with all this hand washing and sanitizing, dry skin, eczema breakouts, and contact dermatitis have become even more troublesome. What can we do about it?
Join us for a quick and very insightful video interview with Dr. Alana Kennedy-Nasser as she shares with us how to keep kids safe as they go back to school in-person and how to keep kids developmentally “on track” as they attend school virtually.
What questions do you have for back to school content experts? Read on for some brilliant questions and answers from this super smart teacher mama, Lacy Cunningham, M.A.Ed.
Online learning can be a fun experience filled with lots of great experiences; but as humans, we were meant to interact with one another and have companionship. How can we develop ways to ensure kids stay engaged while learning in a different setting?
This year, the normal first day of school jitters will likely be accompanied by some new concerns that we have not encountered before. Lindsey O’Sullivan, Child Life Specialist, provides guidance on how to navigate these conversations with your child.
As we prepare for school to begin, those of us that are sending our kiddos slowly back out into the world may find ourselves explaining what has changed (again) in the last few months. Dr. Chad Brandt, a therapist who specializes in anxiety in children and teens, offers us a few guideposts for talking about the coronavirus with children.
Validation means to acknowledge and sometimes normalize someone’s feelings or reactions to a specific scenario. Validation continues the conversation, creates trust, and helps children communicate their truest feelings with the adults around them.
We should not shelter our children from our disappointment. While it is natural to have this desire, it is not a good idea to want to keep them from knowing that we, as adults, sometimes have “bad” (i.e. not the most fun) feelings.
In February we launched a reboot of our #Iwasmadeamasterpiece social media campaign from this summer with a fun valentines themed twist.
As part of our birthday surprise, A Children’s House for the Soul announced the launch of our public capital campaign to buy 1972 W. Dallas and renovate the space into the first ever community building dedicated to the social, emotional and spiritual support of children with chronic skin conditions/birthmarks and their families.
The 2020 Camp Dermadillo Reunion was a great success! We had more than 60 friends new and “old” come to Speedy’s Fast Track for a great day of go-kart racing, mini golf, laser tag, arcade games and more.
Love the Skin You’re In Family Day 2019 is officially in the books! We had a great time and learned a lot and I am so grateful for the wonderful day!
As the month of November is upon us, I know we are all going to begin reflecting on what we are thankful for, and secretly looking towards the new year thinking of things we hope to come. I just wanted to write you a letter to thank you, Skin, for all the ways you’ve been there for me and shaped me as a person. I never really stopped to think about it before, but in a way, you have made all the difference.
We are so thankful to Joyce and Leah for both sharing their story about Leah’s eczema.
While eczema can seem common, it takes on a lot of different forms. Also, many people don’t understand how much pain and discomfort can come from eczema. Here are a few ways to explain eczema to different ages.
Hello, my name is Megan and I have alopecia. It is alopecia awareness month and I would like to share my story. The basic description of alopecia is that hair falls out in patches, or total loss of hair on the scalp or the body. Alopecia is different for everyone, and for me, I went through different stages.
Alopecia areata is a common autoimmune disorder that often results in unpredictable hair loss. It affects roughly 6.8 million people in the United States.In the majority of cases, hair falls out in small patches around the size of a quarter. For most people, the hair loss is nothing more than a few patches, though in some cases it can be more extreme.
In honor of National Alopecia Awareness Month, one of our Mom’s is sharing her and her daughter’s path over the last 10 years since diagnosis. Thank you Stacy for sharing your family and your faith with us!