ROW / HHT Belgium

20/05/2026

Today it is official Belgium has a HHT center. 😀🎉👏🏻

04/05/2026

🩸👃 Little Red says… WHAT you put up your nose REALLY matters 👀

It might seem simple… grab a bit of tissue, toilet roll, whatever’s close…
But when you live with HHT, it’s not that simple ❌

The area around your nose and mouth isn’t just skin…
It’s a direct pathway for bacteria to travel deeper into your body ,even towards the brain 🧠⚠️

And for many of us with lung AVMs, we’re already told to take prophylactic antibiotics before certain procedures…

👉 So why would we ignore what we’re putting directly inside our noses?

Let’s be real for a second 👇
🚫 Public toilet roll ,NOT sterile
🚫 Tissues at the bottom of your bag ,NOT sterile
🚫 Kitchen roll ,rough, fibrous, full of chemicals
🚫 Even household toilet paper ,NOT designed for inside your nose

These are not made for delicate nasal tissue…
They can cause more trauma, more bleeding, and increase infection risk ❌

✅ Haemostatic dressings ARE different
✔️ Sterile packaging
✔️ Designed specifically for inside the nose
✔️ Impregnated with clotting agents to stop bleeding FAST
✔️ Allow proper packing and come away safely when ready
This isn’t about convenience…

👉 It’s about safety, control, and protecting your health
💬 No matter how small the bleed
💬 No matter how young the patient
We should ALL have access to the right products

❤️ Because stopping a bleed quickly and safely =
less blood loss, less trauma, and less risk

📢 Let’s start normalising proper care
📢 Let’s start asking for what we NEED
🔁 Share this post
🌍 Help someone learn something today
🔎 Check out our website for more info & support www.hhtireland.org
Together, we raise the standard 💪🩸

04/05/2026

Inside Little Red’s World… ❤️🩸

When you look at Little Red, you might think HHT is just nosebleeds and a few red spots on the skin…
but the real story is what you can’t see 👀

Because with HHT, AVMs (arteriovenous malformations) can be silently forming deep inside the body ,in the lungs 🫁, liver, brain 🧠, stomach, bowel, and even the uterus.

No warning ⚠️
No obvious signs ❌
Just there…

That’s why no two HHT journeys are ever the same… even within the same family 👨‍👩‍👧‍👦
What affects one person mildly can be life-threatening for another.

👉 And that’s exactly why screening is so important 🩺
Screening isn’t just a box to tick,
it’s protection 🛡️, prevention, and peace of mind 💭
It can mean the difference between catching something early ⏳… or finding out too late 💔

💡 Knowledge is power
💬 Shared stories save lives
🤝 Awareness connects us all

Please take a moment to check out our website for support and information,
🌐 www.hhtireland.org
And don’t forget to share this post 🔄 ,you never know who might be searching for answers today.
Together, we raise awareness 💪
Together, we make HHT seen ❤️

04/05/2026

🩸🔍 Have you ever wondered why it can take YEARS to piece the HHT puzzle together?

Just look at how many different departments our patients can pass through…

🧠 Neurology …for strokes and brain AVMs
🫁 Pulmonary …for breathlessness and lung AVMs
🩺 Cardiology …for oxygen issues and heart strain
🩸 Haematology …for severe anaemia, iron infusions, transfusions and primary care support
🍽️ Gastroenterology …for stomach and bowel bleeding
👃 ENT …for nosebleeds that just won’t stop
🧬 Genetics …for family testing and confirmation
🩻 Radiology …for scans and imaging
💋 Dermatology …for tiny red telangiectasia spots
💜 Gynaecology …for unexplained uterine bleeding or AVMs
🤰 Maternity …for high-risk pregnancies
🧩 Endocrinology …for hormone imbalance and chronic fatigue
💛 Hepatology …for hidden liver AVMs
🚑 A&E …for sudden bleeds, collapses or unexplained anaemia
🦷 Specialist Dentistry …for oral telangiectasia and bleeding gums

So many symptoms.
So many specialists.
Yet sometimes… no one is piecing the puzzle together.

A doctor may see one piece…but not the full picture.

That’s why one simple question matters:
❓ “Is there anyone else in your family with unexplained bleeding issues?”
💡 That one question could be the missing piece.

At HHT Ireland, we’re helping families with piecing the puzzle together. From the dad with strokes and nosebleeds… to the young person struggling to breathe… to those battling relentless anaemia, hidden blood loss, heavy periods or pregnancy complications.

Every symptom is a puzzle piece.
Every story matters.
HHT affects the whole body,not just one system.
🌊 We’re making waves ,one post, one family, one conversation at a time.

👉 Keep sharing. Keep talking about HHT.
👉 Please share only with the HHT Ireland logo visible.
👉 Visit www.hhtireland.org to learn more.

🦓🩸

29/04/2026

29/04/2026

🌳🩸 Little Red’s Family Tree… does yours tell a story too?

So many of us didn’t just wake up with this…

We grew up in families where nosebleeds were “just one of those things”…
An aunt, a parent, a grandparent… always bleeding, always explaining it away.

But here’s the truth… 👇
It’s not always just nosebleeds.
It can be GI bleeding, strokes, anaemia, even clotting issues ,pieces of a puzzle that were never joined up 🧩

💬 Imagine if one simple question was asked sooner:
“Does anyone else in your family bleed?”

That ONE question could change everything.
⚡ Quicker diagnosis
⚡ Earlier support
⚡ The right referrals to the right specialists
⚡ And fewer people left struggling without answers

🧠 To our medics ,please ask the question. It matters more than you know.
🌳 To our community ,take a look at your own family tree…
How far back can you trace the signs?

You might be surprised what’s been there all along…
And yes, we know more people are now being diagnosed de novo ,but for many of us, there’s a trail… a quiet history running through generations.

That’s why we speak up.
That’s why we raise awareness.
That’s why we keep going 💪❤️

👉 Check out our website www.hhtireland.org
👉 Share this post
👉 Help someone connect the dots sooner

Because awareness doesn’t just educate…
it changes lives.🩸❤️

🌳🩸

05/04/2026

Ik Wens iedereen een Vrolijk Pasen 🐇🐥🐤🐰! Vandaag vieren we ook ons 1 Jarig bestaan als Patiëntenvereniging.
Je souhaite à tous de joyeuses Pâques 🕊️🐰🐥🐇!
Aujourd'hui, nous fêtons également notre premier anniversaire en tant qu'association de patients.

18/03/2026

Het was heel interessant in Rome op de HHT Europe bijeenkomst. C'était très intéressant à Rome avec Amro France HHT, HHT Ireland, HHT Italy, ROW / HHT Nederland HHT Onlus HHT SWISS HHT España .....