Today Catherine writes about her son Alfie, who turns two years old today! Happy birthday Alfie! He has Bullous Ichthyosis (also known as EHK). They live in the UK. Catherine explains the way Ichthyosis impacts on daily life, and how difficult it can be for people without the condition to understand the extent of it. She also writes about the doctors' low expectations of people with Ichthyosis - and this proves how important it is to share our stories. I hope they read them.
Meet Catherine and Alfie.
On 22nd May 2013 I went into labour. Having only just moved house that week, I hadn’t seen my new midwife or done a hospital visit– my due date wasn’t for another month. I went straight to hospital and at 5:15am, 9 hours later, our little boy Alfie arrived in the world. This is where our ichthyosis story started.
When we finally got to see Alfie, he was in a humidified incubator wearing a nappy that looked too big for his tiny body and was surrounded by machines. It was a shock to see him, he was bright red, his skin had peeled all over, he looked like someone had poured boiling water all over him. It was heartbreaking. We weren’t allowed to touch him with our bare hands, we had to change nappies and bottle feed him wearing gloves while he was still in his incubator. The doctor told us that they suspected ichthyosis but were unsure. One thing the doctor did say was that Alfie would not have much of a life! Words can’t describe how we felt at that point.
May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.
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