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‘I’m not out partying and going to bed when other people get up,’ she said. ‘I sleep normally at night and get up in the morning, just like other people do. The difference is I don’t go out in the day. I work from home on my blog nightlens and my YouTube channel.’

Andrea Ivonne’s XP also meant she had to be home-schooled by her mum and she has never been able to go out to work.

And in 2014, when she attended the XP Family Support group conference, she learned that female XP sufferers need to have children before their late twenties, because the condition also means they will go through an early menopause.

She says she never wanted children but admits that going through the menopause is tough.

‘My body is so tired. I get exhausted a lot, my moods have been on a roll, my migraines are back and so many other things have been going on with me,’ she said.

‘But I am getting better and I am slowly getting back to my old self and that feels wonderful.’

She also knows that her life expectancy is low but refuses to dwell on it.

‘I am really happy with my life and see how beautiful life is,’ she said.

Still, despite all the restrictions XP has imposed on her life, she remains admirably positive.

‘I’m okay with it all now,’ she said. ‘Four years ago, I had a really bad depression over it but then I decided to learn to love myself.

‘I read of lot of inspiring books and took up yoga and meditation, and now I am happy in a way I never thought I could be.

‘I never imagined I would be working as a blogger or have my own YouTube channel and so I think it was all just meant to be.

‘If I think about my life five years from now, I want it to be just as it is now. I am happy and I want to stay that way.’

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