A Day in the Life of Dana & LaraDana & Lara

Dana and Lara have Harlequin ichthyosis and regardless of what day it is or whether there are any of the numerous hospital appointments their day starts at 6:30am, when Dana & Lara are woken for their breakfast.  Soon after this they have the first of their baths. They are bathed for at least an hour; this is to help clean off any old creams and to soften the thick scales that have formed. After the bath both girls are creamed from head to toe with a thick greasy cream that serves several purposes; firstly it helps to keep the skin supple and promotes the shedding of the excess skin, secondly it seals the skin to prevent fluid loss as dehydration can be a major problem, lastly but very importantly the cream also acts as a barrier against any potential infection.

During the day both girls are fully creamed at least another three times before they have their second bath of the day at 7:00pm, followed by another full creaming, after this they have one last cream up at midnight. Despite the strict skincare regime Dana attends a mainstream school, where she is able to carry out virtually all of the normal school activities, and to avoid disrupting lessons Dana’s skincare is done at morning break and lunchtime during school hours. As well as the skincare regime both girls have to ensure that they drink plenty of fluids to avoid dehydration (Dana takes 3 drinks bottles to school).

Because the skin grows at such a fast rate their metabolisms work really fast to try and keep up, which means they need to be on a high calorie diet. Not only is the skincare a lot of work, but the constant shedding of skin means that the house needs to be vacuumed at least once a day, and because of the creams both girls need to have multiple changes of clothing, added to the bedding which is also changed every day this adds up to a lot of washing and ironing which has to be done daily.