Our Story at HHT Ireland
How We Started HHT Ireland
This voluntary organisation was set up in the memory of the late Grace Nolan and the late Paul Woods. Both children died suddenly - aged 9 and 22 respectively, from HHT in the lungs. It is hoped that no other person should suffer this fate.
Awareness is key, so please take the time to learn about HHT and pass the word.
HHT Ireland has four core objectives
- Raise awareness.
- Provide support to affected families.
- Advocate on behalf of HHT families for improved services in the treatment of HHT.
- Help identify undiagnosed HHT patients.
"HHT Ireland aims to raise awareness of HHT in Ireland in order to support those affected by HHT and identify undiagnosed sufferers. "
On Aodhán's 56th birthday, in 2006, he suffered a stroke. 5 years later in 2011, he was found to have a Pulmonary (lung) AVM, as a manifestation of his HHT. This was successfully embolised at the National HHT Centre, in The Mercy University Hospital in Cork, under the care of Drs. Adrian Brady & Terry O'Connor. Aodhán's recovery has been such that he cycled 5500 km (3800 miles) across America, from Los Angeles to Washington DC, in 2012, and he has subsequently guided others on cycling trips in Ireland, Poland, Vietnam, Laos and Cuba. Aodhán remains very fit and well, other than suffering from heavy nosebleeds, especially in response to temperature changes. HHT remains part of his life, but successful treatment of his pulmonary AVM has maintained his healthy, active lifestyle and protected him from further strokes.
Christian was just 3 years old when he suffered a sudden brain haemorrhage due to HHT. Although Christian was not formally diagnosed, his mother was aware of HHT in the family and informed the ambulance crew and the doctors immediately. Due to the quick reaction time and knowledge of HHT by both Christian's family and the team of doctors & surgeons, his life was saved. Today he continues to recover and is doing well.