Aussie’s With HHT

07/05/2026

🧠💙 MAY IS MENTAL HEALTH AWARENESS MONTH 💙🧠

Living with HHT isn’t just about the bleeds people see…
it’s about the exhaustion nobody sees.
The broken sleep.
The anxiety before leaving the house.

The mental load of constantly planning around your health.
The fear, frustration and emotional drain that can quietly build behind the scenes.
Today, Little Red wants to talk about something many of us struggle with…

✨ REST ✨
Little Red says,

🩸 “Resting isn’t lazy… it’s necessary.” 🩸

To all my fellow HHT’ers, this is your gentle reminder 💛

Bleeds steal our sleep.
Low iron steals our energy.
Hospital appointments steal our time.
And trying to keep going like everything is “fine” can steal our mental wellbeing too.

Sometimes we push ourselves because we feel guilty for slowing down… but the truth is,

🌿 Rest is not weakness.
🌿 Rest is survival.
🌿 Rest is part of managing HHT.

If we don’t allow ourselves time to pause and recharge, our bodies usually make that decision for us ,and rarely at a time that suits us.

You wouldn’t let your phone run on 1% battery every single day and expect it to work properly 🔋
So please don’t expect that from yourself either 💙

✨ This is your sign from Little Red,
You are allowed to rest.
You are allowed to say “not today.”
You are allowed to protect your peace as much as your physical health.
And if this message spoke to you, please share it 💬

Because sometimes the strongest thing we can do is remind someone they are not alone.
💙 Please also check out our website for support, resources and community. www.hhtireland.org

💙

02/05/2026

05/02/2026

Non HHT related, just a joy of living in Australia. Nice little Eastern Brown snake in our bathroom. No. 2 on the world list of venomous snakes 😬

25/01/2026

We have some hot weather happening here in Echuca for the next week, hot dry air is not good for my nose, wish me some luck.

24/01/2026

A short annual survey to help Cure HHT understand community needs, improve care and education, and strengthen support for patients and families.

13/01/2026

🇦🇺✨ BIG NEWS FROM LITTLE RED! ✨🇦🇺

Little Red is bursting with excitement and couldn’t wait to share this amazing awareness moment with our HHT family around the world ❤️

If you remember back in November, our board member Sharnie bravely shared her personal HHT story in a popular national Chat Magazine ,and now her story has travelled even further…👏👏

📢 That’s Life Magazine in Australia has picked up Sharnie’s story and will be publishing it on January 26th!

This is HUGE.
These magazines sit on coffee tables, in waiting rooms, hair salons, hospitals ,everywhere. The reach is massive, and the impact could change lives.

For our Australian HHT family, this is such an important moment. Awareness saves lives ,and this awareness is coming all the way from Northern Ireland to Australia 🌍❤️

Little Red is so proud of Sharnie for speaking up, sharing her journey, and helping shine a light on HHT on a global stage.

🇦🇺 Ozzie HHT’ers ,Please share this post and when you see it, please share it far and wide!
Let’s get this issue into every home, every clinic, every conversation.

Together we are louder.
Together we are stronger.
Together we are changing lives.
👇 Drop a 🇦🇺 if you’re cheering this on
🔁 Share this post to spread the word

Aussie’s With HHT

13/01/2026

We’re excited to announce that our community feedback survey is now live! Your voice matters, and we want to hear from you. Please take a few moments to share your thoughts and help us improve our community. Your feedback is invaluable!

Take the survey: https://loom.ly/_8eR-1A

28/11/2025

https://youtu.be/fan0YHTng6A

This short animated explainer video uses motion graphics to explain Hereditary Haemorrhagic Telangiectasia (HHT) — a rare genetic disorder that affects blood...

28/09/2025

😢❤️ Hey friends, it’s me… Little Red. Can I be honest?
Sometimes I just feel extra emotional ,sad, teary, or even a bit snappy ,and it’s not just because life with HHT can be tough. A lot of the time it’s down to my iron levels or haemoglobin being low. 🩸

Here’s why it happens ⬇️
🧠 Iron is super important for the brain ,it helps make “feel-good” chemicals like serotonin and dopamine. If my iron is low, my mood can dip too.
💨 Low haemoglobin means less oxygen in my blood ,which leaves me tired, foggy, and drained.
😔 And when you’re exhausted all the time, even little stresses can feel overwhelming.
If you’ve noticed yourself feeling more emotional or sad than usual, it might not “just be in your head.” It could be your iron or haemoglobin levels trying to tell you something.

👉 Keep a check on these signs ,it might be time to ask for some blood tests.

📢 Please share this post ,it could help someone recognise what’s going on with them too. And remember to check out our website for more information and support.👇
www.hhtireland.org