How to care for wounds with Epidermolysis Bullosa – my experience

Every day for me starts with a long wound care routine. With Epidermolysis Bullosa (EB), skin care is essential because wounds and blisters form very easily. On this page, I describe how I care for wounds with Epidermolysis Bullosa, what my daily morning and evening care looks like, and what medical supplies we use for it.

Every morning for me begins with wound care. With Epidermolysis Bullosa (EB), skin care is an essential part of every day. The skin is very fragile, and wounds appear practically constantly, which is why regular care is important.

When I wake up, I call my mom. Mom prepares everything needed for wound care – bandages, plasters, creams, and other medical supplies. During the care, I mostly just lie on the bed, and Mom does everything necessary. We already have our daily routine.

Mom does the wound care on the bed, and it usually takes approximately 45 to 55 minutes.

Caring for leg wounds with EB

First, Mom treats my calves, as that’s where I tend to have the worst wounds. She first removes my pajamas and takes off the old dressings. For my calves, we most often use Mepilex AG plasters, which are suitable for wounds with more inflammation or exudate.

After removing the dressing, Mom sprays the wounds with TENA or MoliCare cleansing foam. Approximately twice a week, we also use Prontosan, which serves as a wound disinfectant.

Then the dressing is cut to the required size. Depending on the wound condition, we use:

  • Belogent cream for worse wounds
  • or Aloe Vera Gelly, which helps soothe the skin

Finally, the dressing is secured with TG-fix.

Caring for feet and knees with EB

After the calves, we move on to the feet. Mom applies a special compounded ointment prescribed by our general practitioner. If a wound appears on the foot, it is covered with a plaster.

The foot is then wrapped with gauze, and finally, a bandage is used to hold everything in place.

Then it’s time for the knees. Mom cuts the bandages, removes the gauze, sprays cleansing foam, and applies cream to dry scabs. The wounds are covered with a dressing, then the knee is wrapped with gauze and secured again with a bandage.

Caring for thigh wounds with Epidermolysis Bullosa

On the thighs, the TG-fix and old dressings are first removed. The wounds are cleaned with cleansing foam, and dry areas are treated with Epaderm cream.

For the wounds themselves, we most often use:

  • Mepilex AG
  • or other suitable dressing as needed

For some wounds, Belogent cream or Aloe Vera Gelly is also used. Finally, everything is secured again with TG-fix.

Once my legs are done, Mom helps me put on socks, underwear, and pants.

Caring for back and torso wounds with EB

Then I sit up, and we continue with the upper body. Mom removes my tank top and starts with my back, where I have the largest and most problematic wound.

After removing the dressing, the wound often starts to bleed. At that point, Mom presses sterile gauze to stop the bleeding. This moment is usually quite painful.

Once the bleeding stops, the wound is cleaned with foam, and, if necessary, we use:

  • Epaderm cream
  • or Aloe Vera Gelly

For the back, we most often use Mepilex XT because it can absorb a larger amount of fluid from the wound.

Caring for chest, neck, and abdomen wounds with EB

After the back, the chest is treated. Here too, bleeding sometimes occurs after removing the dressing. After stopping the bleeding, the wound is treated with Belogent cream and covered with a Mepilex AG plaster.

Smaller wounds on the neck or abdomen are covered with a Mepilex Lite plaster, which is thinner and suitable for smaller wounds.

A chronic elbow wound with Epidermolysis Bullosa

Finally, Mom treats my left elbow, where I’ve had a large chronic wound for many years. For this wound, we use Aloe Vera Gelly and a larger Mepilex Lite dressing.

Caring for buttock wounds with EB

At the very end of the morning care, once I’m dressed and have my shoes on, I stand up, and Mom treats the wounds on my buttocks. Wounds often appear in this area too, and they can be very painful.

If the wounds are deeper or larger, sitting can be very uncomfortable for me. Therefore, these wounds must also be regularly cleaned, creamed, and covered with a suitable dressing.

Blisters and new wounds with Epidermolysis Bullosa

With Epidermolysis Bullosa, new wounds appear constantly. Some are small, others larger.

Blisters appear regularly, and Mom always pierces them with a sterile needle to prevent them from enlarging and damaging the skin.

Thanks to Mepilex plasters, dressings no longer stick as often as in the past, so changing them is less painful.

Evening wound care with EB

In the evening, we only do a check-up care, which takes approximately 15 minutes.

We check all wounds and, if necessary, change the dressing if it is:

  • slipped
  • saturated
  • or if a new wound has appeared

During the day, dressings are changed as needed, for example, when a wound starts to hurt or when a dressing comes loose.

Medical supplies we use for EB

For daily wound care, we use several types of medical supplies and special creams.

For wound care, we mainly use:

Plasters and Dressings

Wound Disinfection and Cleaning

  • Prontosan (approximately twice a week)
  • TENA or MoliCare cleansing foam

Creams

  • Belogent cream
  • Aloe Vera Gelly
  • Epaderm cream

Other Materials

  • sterile gauze
  • hydrophilic knitted bandages
  • scissors

You can read more about me on this page “About Me”