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PATIENT VOICE
Ichthyosis during a pandemic Amy Probert
A
s a brief introduction, I’m Amy and I live with my partner Mark, who is the daddy of our three children, Kaydon (8), Isabella (5) and Poppy-Rose (4). Poppy made her dramatic entrance to the world at 32+5 weeks and has harlequin ichthyosis. As you can imagine, life with three children close in age is more than hectic at times, especially factoring in appointments and the skin care regime that is part of being an ‘ichthy family’. For many of us, life changed dramatically back in March 2020, so I’d like to give an insight into what life has been like for our family over during the COVID-19 crisis. Initially, my concern was medical supplies. So many worries about being unable to receive prescription items as everybody began to stockpile and GPs were inundated with requests. And let’s not forget the great toilet roll shortage of 2020, which just so happened to coincide with when Poppy decided that she would toilet train herself overnight! We also had moments where we needed access to urgent medical care from our GP and dermatology team – both of which were managed via telephone and were reassuringly very effective. At this point, I’d love to extend my enormous thanks to our dermatology team and GP/pharmacy. Another hurdle was the shortage of PPE, as we use gloves as part of our care regime. This was a stressful time as Poppy had suffered a skin infection prior to lockdown and gloves for us were part of infection control. Thank you to family and friends who pulled together to donate or help us to source gloves. Moving on from the worries surrounding daily care came the overwhelming anxiety and fear of the www.bdng.org.uk
Not everything about lockdown was difficult. It gave us time as a family to pause and spend time together unknown; something that a lot of parents of children with ichthyosis are more familiar with than most. From the day our children were born, we were often told the words: “We just don’t know”. Coupling that with the unknowns from a global pandemic increased anxiety in many parents whose children have ichthyosis I had spoken to.
Poppy’s prematurity meant that her lungs were not as developed as children born full term. Although her sevenweek neonatal unit stay was relatively uneventful, her exposure to viruses preCOVID meant that her first three years were spent in and out of hospital due to respiratory infections. Poppy required support via oxygen, feeding tubes and
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