'I started to think I was going a bit crazy and imagining the symptoms' Zoe Baillie started having symptoms of Pompe disease in her late teens, but she tells PMGallagher1 it was not until her mid-30s by the time she was finally diagnosed
Being diagnosed with Pompe disease was pretty devastating because I had just started my career in nursing, which I’d worked so hard to get to. I dragged myself through three years of a nursing degree with these worsening symptoms and also with a baby, who was only one when I started. Then I got my dream job as a neonatal nurse.
There was a lot of waiting before I could get started on my treatment. The pandemic didn’t help, but to be honest I’m not one of those people who think life would have been so different if Covid didn’t happen. There wasn’t much in it really. I did start my treatment in October 2021 so it didn’t cause a huge delay.
I was working during the pandemic and loved it. But it soon became clear that I couldn’t go back to the ward. I started working in contact tracing for a while, then moved into public health. I just wasn’t able to maintain the energy levels needs though – especially being a parent of a young child as well, juggling all of that wasn’t doable. Something had to give so unfortunately I was medically retired in November 2022.
It’s having to adjust being a mum really, which can be quite difficult for me, when my child wants more from me than I can cope with. But she loves riding on my mobility scooter and think it’s really cool. Ulla asks me questions about my condition – they were initially disappointed to find out that they didn’t have the same disease, but it’s for the best. Ulla has a very good understanding of it all because friends are often asking “why has your mum got that scooter?” and things like that.
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