Aussie’s With HHT

14/06/2026

To all our HHT caregivers, family members, and loved ones: you deserve visibility too.

Did you know that approximately 1 in 5 adults provide care to a loved one, and over 60% of these caregivers report symptoms of burnout? We created a new resource to help you remember to R.E.S.T.

Share this infographic to spread the word about these available resources. https://loom.ly/-aK3NJ4

31/05/2026

G’day, I have some more details for the HHT Information Day, see updated flier below. I have also setup a register for people who want to attend this event. I will upload the link shortly on a new post

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