June 1, 2026 · 5 min read

HHT Ireland welcomes you to the start of HHT Awareness Month. This June, we are dedicated to shining a light on a condition that is often “silent” but carries a profound impact on families across Ireland. To begin our month of awareness, we are sharing a powerful podcast featuring the story of Michael MacGinty, whose family history illustrates the reality of living with Hereditary Haemorrhagic Telangiectasia (HHT) across five generations.

A LEGACY OF FIVE GENERATION

1. The First Generation: Michael’s great-uncles, who would travel from their farm in Islandeady to markets in Castlebar clutching blood-soaked rags.
2. The Second Generation: His grandmother, who lived into her eighties constantly swapping out bloodstained handkerchiefs, a sight accepted by everyone as “normal”.
3. The Third Generation: Michael’s father, Padraic, who lived with the same “unexplained nosebleeds” until a 2002 television interview finally gave his condition a name.
4. The Fourth Generation: Michael himself and his sister Dara Woods, both of whom were diagnosed after genetic testing at the specialist centre in Cork.
5. The Fifth Generation: Michael’s 22-year-old son, who inherited the HHT gene but continues to live a full life as a “jock” playing senior rugby.

THE SEARCH FOR A CURE

Despite affecting families for generations, there is still no cure for HHT. It is a vascular disease that causes “bleeding points” or Arteriovenous Malformations (AVMs) in the nose, lungs, brain, and other organs. Michael’s father tragically died from complications of the disorder, as did Michael’s 22-year-old nephew, Paul, whose passing became the catalyst for his mother, Dara, to found HHT Ireland.

KNOWLEDGE IS POWER

While a cure remains elusive, Michael emphasizes that “knowledge is power”. Through the podcast, he discusses how a formal diagnosis allows for:

• Specialised Screening: Such as the life-saving work done by Dr. Adrian Brady at the Mercy Hospital in Cork.
• Effective Management: Treatments like Sclerotherapy to close bleeding points and a “daily drugs diet” to manage risks like strokes and seizures.
• A Full Life: Proof that with the right care, those with HHT can live active, normal lives.

Help Us End HHT in One Generation

Michael’s wish is for everyone with HHT to become aware of their condition. It is estimated that up to 1,200 people in Ireland are living with HHT, many of whom remain undiagnosed.

Hear more about his “diagnostic odyssey” and his hope that advances in technology may one day allow families to end the cycle of HHT.

If someone you know suffers from profuse, unexplained nosebleeds, please invite them to visit www.hhtireland.org. Together, we can ensure no more generations have to suffer in silence.

#HHTAwarenessMonth #HHTIreland #KnowYourFlow #RareDisease