What is EB?
Epidermolysis bullosa (EB) is a group of rare, genetic conditions characterised by extreme fragility of the skin. For people living with EB, even the smallest amount of friction can cause painful blisters and wounds.
Our Day in the Life series aims to make these realities more tangible by sharing the lived experiences of individuals and families affected by EB. We provide a glimpse into a typical day for Elliott (*we’ve hidden his real name for privacy purposes), a 21-year-old living with Recessive Dystrophic Epidermolysis Bullosa (RDEB) in Hong Kong.
Mornings with EB: Wound Care and Pain Management
For Elliott, the day begins with a quick monitoring of his skin and wounds condition. Elliott’s caregivers check his larger wounds and replace the top layers of dressings if needed. The contact layer is usually left in place, as removing it too often can disrupt healing and cause additional trauma. This routine takes around 30 minutes and helps manage wound exudate that builds up overnight, and will tie him over until his longer dressing change in the afternoon.
By 7am, it’s time for breakfast. Eating with EB poses a great challenge as the skin inside the mouth and throat is just as fragile as the skin on the outside. Blisters can form from brushing teeth, chewing, or swallowing. As a result, Elliott avoids hard or crispy foods and only eats soft, pureed meals. Elliott’s fingers are fused together into a mitten due to scarring over time, so he needs help with feeding.
Wound healing consumes a great amount of energy, which means Elliott requires significantly more calories than the average person. He also has anemia, a common complication of EB due to chronic inflammation from ongoing wounds. Elliott receives iron infusions to help his body produce more red blood cells.
Daily Activities with EB: Home Therapy and Exercise
Elliott is unable to attend school in a conventional setting, but that doesn’t stop him from learning and exploring his curiosity. He attends a range of therapy sessions at home which include physiotherapy to help maintain mobility and flexibility. These daily exercises help prevent contractures caused by repeated scarring that may limit his movement. Therapy can be painful and exhausting, but Elliott is resilient and is supported by his family and therapists.
Lunchtimes with EB: Rest, Meals and Family Time
Elliott eats lunch around 11:30am, followed by a nap after. Sleeping can be difficult at night due to pain and itching, so daytime rest can be helpful. In the afternoon, Elliott watches videos on his iPad, especially cooking content on YouTube. He also enjoys eating snacks throughout the day, such as ice cream or soft cheese. These snacks throughout the day help boost his calorie intake as well.
After lunch, Elliott also spends time catching up with his dad, watching videos and looking through family photos of past travels. When possible, Elliott goes out into the community to run errands like grocery shopping or picking up his favourite sugary drinks. These outings offer a sense of normalcy and independence, however small they seem.
Dressing Changes: A Major Part of Living with EB
Elliott’s daily dressing changes are one of the most demanding parts of his day. They take place in the late afternoon and can last up to 3 hours and can be very painful.
This process begins with a shower, where warm water softens and loosens Elliott’s dressings. After removing the dressings, Elliott’s skin and wounds are washed carefully with soap. He then moves to his bed, where each wound is cleaned with sterile saline.
Antiseptic ointments, such as manuka honey, paw paw ointment or aloe vera, are applied to prevent infection and keep wounds moist. A non-adherent contact layer is placed first, followed by absorbent layers to manage wound exudate which builds up throughout the day.
Because of the curvature of the body, dressings are often pre-cut to fit specific parts of Elliott’s body, ensuring coverage while minimizing friction. This routine requires extensive preparation and time.
Evenings and Family Life with EB
After dressing changes, Elliott eats dinner around 7pm. After dinner, he relaxes by playing on his iPad. Despite the demands of living with EB, evenings are also about togetherness. Sharing meals, talking, and spending time with family creates moments of comfort and normalcy that are just as important as medical routines.
Bedtime with EB
Elliott gets ready for bed around 9pm. Sleeping with EB requires careful environmental control. Because bandages trap heat, a portable fan and air conditioning are used to keep him cool. A humidifier helps prevent the air from becoming too dry, as dryness can make healing wounds itchy.
Elliott sleeps on his back, so wounds on his back are especially vulnerable to friction. He experiences constant itching as his wounds heal. Medications such as antihistamines help to an extent, but ice packs or gentle patting can offer relief. Scratching must be avoided, as newly healed skin is extremely fragile and can break down easily.
Life Beyond EB: Elliott’s Interests and Hobbies
Elliott enjoys going out to eat and loves spicy Chinese cuisine such as Mapo Tofu. He also enjoys travelling and going on staycations in Hong Kong. While EB shapes Elliott’s days, it does not define who he is. Through support from his family, caregivers and therapists, Elliott continues to live an abundant life.
For individuals like Elliott, living with EB brings extraordinary challenges, but they don’t have to face them alone.
How DEBRA Hong Kong Supports the EB Community
Debra HK aims to support individuals and families affected by EB by providing resources, community and hope. Through funding research, DEBRA is working towards better treatments and, ultimately, a cure. Read about how families, caregivers, and healthcare professionals came together at the [Second Hong Kong Epidermolysis Bullosa Meeting] to share knowledge and support.
You can help make a difference, too. By donating or raising awareness of EB, you help support families like Elliott’s and bring us closer to a future where EB no longer causes pain.
Find out more at https://www.debra.org.hk/home/main/en and https://www.debra-international.org/.
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