#EverydayEB P2P Tips: Contributor Post feat. Katherine Bartos
Our #EverydayEB P2P Tips series is a community-driven resource that aims to empower and support individuals living with EB in their daily lives. In this series, EB Community members share their practical tips, tools, and strategies to help others navigate life with EB.
We kick off the series with a focus on EB-friendly Clothing and Fashion! In this post, Katherine Bartos, a law student from Austin, TX who lives with RDEB, shares her insights on finding comfort, confidence, and style.
We are still collecting the community’s recommendations on EB-friendly Clothing and Fashion! Whether it’s a favorite fabric, a brilliant hack, a helpful aid or assistive device, or a brand that caters to your EB, we want to know from head to toe. To participate, please take a few moments to fill out the short survey here. In just a few weeks, we’ll compile all the community’s recommendations to share! Thank you for being a part of this powerful community network.
1. How would you define your personal style? What inspires your style?
In my daily life, my personal style tends to prioritize comfort - loose pants, t-shirts, or comfy leggings are my go-to's. For professional settings, I dress formally in business slacks, collared shirts, blouses, and work dresses. I don't have a particular term to describe my fashion sense as it can be quite eclectic, although I like to find ways to incorporate items from books or TV shows I like into my outfits.
2. Please share with us about how you discovered your style. How has your EB impacted this journey?
For a long time, I stuck to dark clothing due to the fear that I would bleed through any light clothing. As I've gotten more adept at managing my EB, I've expanded to include a lot more colors that were previously off-limits into my wardrobe (although I still have a love of black clothing). I tend to favor loose, long clothing as it can hide any injuries or bandages I have while also being comfortable and not too hot in the Texas weather.
3. How do you balance comfort with fashion?
Unless there is a special occasion, I think it is better to prioritize comfort. I usually have one or two pieces of clothing (e.g. a hot pink trench coat, heeled boots, etc.) that I can add to a relatively basic outfit (that accommodates my condition) and make the whole thing look fashionable. Accessories are your friends! As long as the base outfit is compatible with my EB (i.e. covering all wounds, not sticking to any open injury), I can add accessories that complete the look without losing comfort.
4. Do you have any favorite clothing brands or fabrics?
I'm a fan of long, loose chiffon pants or dresses as they are both comfortable and look classy. On the other hand, I tend to avoid denim and outfits with excess zippers which can get caught in wounds.
5. Do you have any hacks, tips, or aids for getting dressed or protecting your skin under clothing?
Socks and tight pants can be used to hold down bandages/medical pads and prevent them from slipping (especially on areas like the upper thigh, toes, etc. that are hard to wrap). HOWEVER, never put tights or any skin-tight clothing directly onto an open wound - it will stick to the wound and open it up when you take them off! If a wound is stuck to clothing, soaking it in water or applying oil can help to loosen it. In addition, if you want to get any kind of piercing, tattoo, hair dye, etc. I would recommend checking in with your dermatologist or primary care doctor beforehand to find the safest way to do so (I recently got a tattoo after getting advice from my dermatologist and it is healing well!). Also make sure to be honest and upfront with hair-dressers, tattoo artists, nail technicians, and others in these fields so they can work in a way that doesn't aggravate your EB and they won't be surprised if something does happen.
6. What advice would you give to fellow EB community members who are interested in fashion?
My advice would be to find your own style by mixing the ones you like most. Most trends go out of style pretty quickly so I would advise avoiding those in favor of finding something that works long-term! With a little creativity, most styles can be accomodated to go with EB and I would recommend putting in the work at the beginning to ensure your clothing is both stylish and comfortable!