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Hereditary Hemorrhagic Telangiectasia
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Hi all, I am a teenager in australia and have been going through a disorder called Hereditary Hemorrhagic Telangiectasia, or hht, which is when you bleed internally, and I have it in my stomach. Some of you may be wondering why this is under trauma, well since I was 12 months old I have been thru MRI's, blood tests, needles, anaesthetic, blood infusions, one colonoscopy, one surgery and a treatment that started early 2025. Because of this, I haven't been able to live a normal life, or I have managed to pretend long enough until know. Recently I have found out I need another colonoscopy sometime in 2026, and along with that I may need to restart the treatment, which terrifies me. To put this simply, I would rather die than do that ever again. I know it's for my health, and I can't control it, but it sucks and has made me unable to live a normal teen life with the mental issues this has caused me. I can no longer think of sleep as normal, I can no longer look at needles without thinking of blood, I can no longer talk about surgeries normally. This has damaged me in more ways than possible, and I hope that you all can support me.
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Thank you for sharing your story. It sounds like you’ve had to face so much from such a young age, and it’s completely understandable that you’re feeling exhausted and scared about more treatments. What you’ve described would be incredibly hard for anyone to deal with.
You’ve shown an incredible amount of strength by talking about this and reaching out for support. It’s okay to feel angry or frightened about what you’ve been through those feelings don’t make you weak, they make you human.
If you ever feel like things are getting too heavy, you can talk to someone at Kids Helpline (1800 55 1800) or Beyond Blue (1300 22 4636 / beyondblue.org.au). Both services are available 24/7 and can listen and help you find ways to feel a bit more supported.
You’re not alone in this, there are people who want to help you through it, and it’s really brave of you to open up here.
Take care,
Sophie M
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