Oprah recently released her Favorite Things 2020 list, and it got me thinking of my own favorites list. What are some of the things that have made our lives a bit easier amid the struggles?
Our family has made several problem-solving discoveries in 12 years of living with epidermolysis bullosa (EB), and I hope you can add them to your resource list if you are enduring some of the same challenges.
The battle against seams
We discovered early on that we had to bandage our son Jonah completely to avoid his clothes rubbing his skin and causing blisters. Even so, we found there were two areas we couldn’t bandage: his toes and his bottom. For these two places, I needed to find seam-free options that would protect him.
My favorite seamless socks are from SmartKnit. They have been our go-to for a long time. They are long-lasting, soft, and truly seamless. Many others we’ve tried still have the bulky corners and aren’t truly seam-free. We leave his toes unbandaged — they will web if we don’t — and these socks have never caused him any problems.
Seamless underwear are much more of a thing now than when Jonah was little. As sensory disorders have come more and more to light, companies are offering more seamless options. We’ve had great luck with Hanna Andersson seamless boxer brief underwear. They are super soft and come in many fun patterns and colors. These can be pricey, though, so keep an eye out for sales, and stock up!
We tried to be really careful with pajamas when Jonah was younger. The softest and most EB-friendly ones we found were Kickee Pants. These are by far the softest pajamas I’ve ever felt, and they just get softer with each wash. They do tend to be a bit of a “skinny” fit, but they have a lot of stretch, so they are easy to get on.
The shoe nightmare
Shoes were our biggest struggle when Jonah was little. It was almost impossible to find shoes that were wide enough for his fully-bandaged foot. As he’s gotten older and can “help” me a bit more in getting shoes on, we have a few more options, but we still struggle. X-Wide New Balance sneakers are our favorite option, both then and now.
We tried Stride Rite and other “wide” brands, but didn’t find any that slide on this easily and are comfortable. Many brands don’t even have an “extra-wide” option, so we are super thankful for these! New Balance sneakers are still Jonah’s go-to when his feet hurt, and we always have a pair on hand.
Jonah was “too cool” for these by the time we discovered them, but other EB families have had great success with Billy shoes. There is no “stuffing” of feet into these shoes, as they completely unzip and zip right back on. Some of our younger EB friends love these!
Making bathing easier
Our favorite bath solution has been the ComfySure Bath Cushion. It is full-body size and provides Jonah cushion when he bathes, plus it keeps him from slipping and sliding. Powerful suction cups hold it in place, and it is machine-washable. It will last a long time, but eventually, even with washing, it can get gross, so we always have a backup. I’ve never felt safe with his skin sitting straight on the tub bottom, and this has been a great solution.
When Jonah was younger and still willing to ride in a stroller, we liked the Maclaren Volo stroller. It had an oversized basket underneath for all the “stuff” that is inevitable with EB, and it will hold children up to 55 pounds. That was important, especially when we went places like ball games, the zoo, amusement parks, or the fair — anywhere we were going to be doing a lot of walking.
Once he outgrew the stroller, we decided to get him a wheelchair. I wanted a power one so he could be in control. We didn’t really need a medical grade one with all the supports and options, since he can walk short distances. We opted for the Air Hawk power chair. It folds up, is relatively lightweight, and he can drive it himself. It has been a lifesaver when we’ve needed it.
I really hope these options will help you, and I’d love to hear of any others you might have discovered during your own journey. One of the greatest gifts EB has given us is other friends walking the same path. I don’t know what I would have done without their recommendations. Hopefully the sharing of ideas will make all of our paths just a bit easier.
Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?