Hi, I'm Sharon , Patient Advocate for HHT Ireland

This June, I'm taking part in HHT Awareness Month to shine a light on a rare and often overlooked condition: Hereditary Haemorrhagic Telangiectasia (HHT).

HHT is a lifelong, incurable genetic disorder that causes abnormal blood vessels. For many of us, it means daily bleeding, life-threatening internal AVMs, and dangerously low blood counts. There’s no cure ..for now, blood and iron transfusions are what keep us going.🩸❤️

This month, I’m walking 5km in short bursts – it might sound small, but with my low haemoglobin levels and regular bleeds, every step is a challenge. I’m doing it to raise both awareness and funds for HHT Ireland, the charity I proudly volunteer with and sit on the board of. I also work alongside Dara to make sure HHT Ireland is visible on all platforms, and I represent Northern Ireland’s patient voice in our community.

We’re a small charity with a big mission:

Find the 90% of families still undiagnosed

Support newly diagnosed patients and their families

Advocate for access to proper care and life-saving transfusions

Keep the conversation going all year round

I’m also a passionate supporter of the Blood Transfusion Service , without blood donors, many of us with HHT wouldn’t be here today.

This is our only fundraiser of the year, so every donation ,no matter how small ,helps us continue this vital work. If you can’t donate, please consider sharing my story to help us reach more people and possibly even save a life.

Thank you from the bottom of my heart ,and on behalf of everyone at HHT Ireland.