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How does it feel?

How does it feel to be diagnosed with a common genetic condition? How does it feel when people look at you like you're making it up? How does it feel when you watch doctors research your condition on Google?


It's heartbreaking. I feel so alone and don't know who to turn to. To know that people are going to look at me like I'm different will always hang over me. I'll never be "normal"- I'll always be the one with marks on her skin, the one with a curved back, and the one who always has something going on with her health.


Previously I've had people give me judgemental looks when I've talked about my condition or opened up about my struggles, and their body language told me all I needed to know- they didn't care.


They didn't care I had a condition that causes tumours to grow in my body. They didn't care about the pain it's caused me, and they didn't care about how little awareness there was around it. This is where I want to change things. May is world Neurofibromatosis awareness month, with May 17th being the official day of awareness.


I will always raise awareness of NF no matter what time of year it is, educate as many people as I can and hopefully, when I become a nurse I can specialise in genetics and use my patient experience to help other young people and make a difference in their lives.



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