Managing Epidermolysis Bullosa (EB) In The Heat
As the weather warms up and the flowers start to bloom, it is a good time to talk about managing the symptoms of Epidermolysis Bullosa (EB) in the heat. People with EB live in every climate all over the world, but hot days can create unique challenges for those with fragile skin. Heat can increase the fragility of skin and make blistering worse for those with EB. Fluid loss through wounds, and the retained heat from wearing layers of dressings and bandages can contribute to dehydration and make it more challenging to stay cool.
While we cannot control the weather, there are strategies to make summer more tolerable. Consider planning your day to avoid excessive walking and outdoor activities during the hottest parts of the day. Drink plenty of fluids to maintain hydration. Consider a mobility aid, such as a wheelchair or scooter, to help you get around when your feet hurt. If you are unable to properly cool your home, talk with a social worker, or family navigator. There may be resources in your community to help.
People with Dystrophic, Junctional, and Kindler EB are at an increased risk for skin cancer. Avoid direct sun exposure during peak UV hours (seek shade). Wear protective clothing, hats, and sunglasses to protect you from harmful rays. Apply sunscreen to exposed skin.
Choose clothing that is lightweight, loose, and breathes well. You may want to try silver fiber, or bamboo socks that conduct heat, and wick moisture away from the feet. Rotate your shoes so they don’t rub in the same place every day. Choose shoes that are lightweight and ventilated well. Check out some of the EB Community’s clothing and footwear recommendations here.
For increased sweating and blisters on your feet, you may want to try using corn flour to absorb sweat. If the sweating is making things worse, talk to your dermatologist about strategies for hyperhidrosis or excessive sweating. If your socks get moist, change socks and do foot care midday. You can keep your change of socks in the refrigerator to help cool your feet down in the afternoon. At the end of the day, you may find it helpful to cool your feet down with a cool foot bath, or cooling gel packs.
If you work or attend school in a warm environment, consider requesting reasonable accommodations from your school or employer if needed. Accommodations could include things such as a personal fan, air-conditioned environment, a place to sit and elevate your feet when needed, or an afternoon break to allow time for foot care. Children with EB may benefit from the option of playing indoors with a friend for recess if the temperature outside is too hot. These types of accommodations can be included as part of an individual healthcare plan attached to a 504 or IEP in school or discussed with your occupational health team at work.
If itch, inflammation, and dryness become worse, consult with your dermatologist. There are multiple medication options to help with itch including topical, oral, and injectables. Cool emollients or lotions stored in the refrigerator can be soothing to hot or itchy skin. Remember to moisturize your skin and use lubricating eye drops or ointment as needed to prevent drying.
EB is never easy, but it can feel more challenging in the hot days of summer. I hope you were able to find a new strategy to help you this season. If you are looking for a fun indoor activity, you should join us at the debra Care Conference in July! It will be air conditioned, fun, informative, and full of cool people like you. I hope to see you there.
If you have any questions or need more advice on managing EB in the heat, you can always reach out to me by phone line at (212) 868-1573 x107 or email at nurse@debra.org.
Stay Cool,
Catherine Doernbrack MSN, RN, CPNP-PC
EB Nurse Educator at debra of America
