Ichthyosis Awareness: Compromising for What Works

It’s Ichthyosis Awareness month so I’m dedicating my posts this month to advocating for those with ichthyosis and sharing a little bit of our story.

Today, I’m talking about skin care. All of the well meaning people in this world like to suggest what we could use on Olivia’s skin and try to hide their horror when they hear that we REGULARLY use bleach and petroleum based products. Here’s the deal: I am a pretty crunchy mama so when I heard these things I searched desperately for “natural” alternatives. Surely other products can work just as well. Surely people are just blindly listening to medical professionals without doing much personal research. Surely there are other options. Trial after trial, especially when Olivia’s skin would get really dry or really tight or really flaky, I would find myself back ro using Aquaphor instead of, or in addition to, Shea butter or organic cold pressed coconut, safflower, and avocado oils.

The reality is that Aquaphor, a product I only knew to use to heal tattoos, is one of the only things that helps alleviate itching. And the fact that it helps with itchiness AND it can help fight bacteria and create a barrier against infection is why I still use it. Even though it leaves grease stains on my clothes, destroys elastic (which is why I use disposable diapers more often that cloth diapers, a very different routine for me when compared to diapering with Oscar), and leaves gunk in my washer (among other minor annoyances), but the bottom line is this: it brings comfort to Olivia. It just works in a way that other emollients don’t work. At the end of the day, any mother is going to do what is best for their kiddo. Bottom line. Full stop. End of story.

So, yes, we put in a cap full of bleach in a bathtub full of water every now and again to kill off any lingering germs after visiting somewhere that was full of people, animals, or just wasn’t very clean. And yes, I use petroleum based products, and disposable diapers, and a cream that I have to wear gloves when I apply it to Olivia’s skin because this routine is what works for her skin right now. It might not work later. And it might not work for someone else’s skin who is affected with ichthyosis. This ability to adapt and respond to needs and to find compromises is what we, as parents, do day in and day out – parents with kids with different needs just find themselves going a little further, but you would do it, too, if you were in our shoes. Bottom line. Full stop. End of story.

I don’t want to end this post without sharing appreciation for Bieresdorf, the parent company of Aquaphor products, because thanks to them folks affected by ichthyosis can receive a FREE case of product once a quarter after sending a letter from a dermatologist. That’s a huge savings for our family. Any company willing to donate product directly to those that NEED it, instead of gauging our pockets deserves recognition.