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Alicia B's story

Alicia B's Story

“My name is Alicia and I’m 14, I’ve wrote at least 5 times trying to work out what to say but this is how VEDS has made me feel.

At school the teachers and TAs would treat my condition very seriously but no one my age or anyone at my school ever understood and would just say things like “so you can die if a ball hits you” or “I still have the same chances of passing away as you do ” these comments would infuriate me and it killed me how no one understood me for example my feelings about it I mean my friends would say things like I understand, I’m so sorry but they don’t they never have.

They think it’s this thing that can be fixed like most things but it’s not it’s something that causes you to be scared or worried about every pain.

I’m not the only one in my family that has it my mum and my baby sister do too and when it comes to my sister I’m very protective I mean she’s a mini me and I hate that she’ll have to have pains or think horrible things about herself the way I have as I’ve grown up. The moment I got told she has it I made a promise to make sure she wasn’t like me that she wasn’t defined by the condition but seen as the girl that has the biggest smile. I’m also extremely lucky enough to have a mother that I could connect to about it but also a mother that’s so strong, brave and confident.

To whoever is reading this know that I’ve grown up with this since the age of 4 and yes for me it was tough but as I grew up, I found people like me and it made me feel not so alone and different from the world. Remember it doesn’t define you, you are you and nothing can take that away from you.”
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