Meet Elyssia
Elyssia is 11 years old and is affected with KRT1 EI with PPK. Elyssia and her family live in the United Kingdom (UK). Elyssia has one of the most severe forms of KRT1 EI within our community, and she has had some traumatic experiences with infections resulting in her being hospitalised. Despite this, Elyssia is ALWAYS smiling, and this is a true testament to her spirit and positive attitude. Please scroll down to see Elyssia’s care routine.
Elyssia’s Care Routine
Every morning Elyssia takes a long soak for 20 to 60 minutes in a medicated bath, and then scrub at the skin to exfoliate thick skin using a Debrisoft pad for another 20 minutes. Mum Kelly then helps to cut any loose skin and lance any blisters Elyssia may have. After drying out thoroughly from her bath, they apply antibiotic ointment (Mupirocin) to any wounds, then moisturise the skin all over using a mixture of Dermol 500, Dexeryl, and Aveeno. This routine is repeated at night before going to bed, but this time they don’t scrub and exfoliate.
In addition, once per week Elyssia washes her hair with medicated Capasal shampoo. To further manage scales on the scalp, once per month they apply Cocois scalp treatment ointment, leave on over night, and then wash off.
Elyssia is also affected by PPK, which means thick skin accumulates on the palms of her hands and on the soles of her feet. To manage this, Mum Kelly uses a Dremal electronic sander once per week, but this frequency often depends on how sore her feet are.
To help protect Elyssia’s fragile skin from seams and friction from walking, she wears special Skinnies socks and lightweight and flexible Skechers shoes.
Elyssia also needs regular pain medication to help her feel more comfortable, for this she finds Paracetamol or Diclofenac work best.
At school, Elyssia has a medical supplies kit, and gets a repeat application of all her creams during the day to help keep her feeling more comfortable.
Like many kids with EI, Elyssia struggles to maintain a healthy weight, and must take regular supplements to boost her calorie intake. She has 4 Fortini smoothies per day, and 2 different vitamins to help keep her getting the nutrients that she needs.
Elyssia’s care routine takes a total of 3.5. to 4 hours every day. Elyssia’s care is shared between Mum Kelly, Dad Simon, and Kelly’s Mum. Kelly wanted to highlight the importance of there being more than one caregiver, and whilst it is sometimes hard to train up another caregiver, such a long daily routine can be very draining for all involved, and as such it is extremely beneficial for Elyssia to have more than one person who knows how to care for her skin.