Erna Katrin’s Care Routine

When Erna Katrin wakes up in the morning, she undresses in the bathtub because a lot of dead skin will come off as she removes her clothes. To manage her skin throughout the day, she uses an emollient (Locobase Repair) to moisturise dry areas.

When Erna Katrin has blisters, she lances them herself, and covers the wounds with bandages to protect them from friction and make them feel more comfortable. When she has wounds she feels very sore and so she can’t participate in sports or swimming at school, but she always tries her best. Sometime she has really bad days and then she uses crutches to help her get around.

To help hydrate her skin and encourage the top layer to slough away, Erna Katrin goes swimming every other day, or takes baths containing vinegar and bicarbonate of soda. She finds it extremely painful to exfoliate the thick skin, so she rarely does this, she waits for the skin to come away by itself, which means her skin often looks patchy.

When Erna Katrin is at home after school, she feels more comfortable when she takes off her bandages and can let her skin breathe.

At night, Erna Katrin uses vaseline to moisturise her skin, and she sleeps in breathable cotton pyjamas.

To wash Erna Katrin’s clothes, Mum Lilja must take everything to the dry cleaners because the vaseline and creams do not wash out properly in the laundry machine at home. Many people affected with EI find that they must replace their home laundry machines more frequently than is typical, and this is because the grease from moisturisers degrade machine parts. This is one of the many hidden costs of having EI.

Erna Katrin struggles physically because of the fragility of her skin. For example, she cannot do activities or walk the distances that she would like, because she always gets painful blisters on her feet.