Dara Woods is Director of HHT Ireland, which is bringing much-needed awareness to a rare but poorly understood blood disease. It’s estimated that 1,000 people in the country could have the condition — of whom around half have not been diagnosed, and may have what Woods calls “ticking time bombs” on their brain or lungs.
As a child, Woods suffered through constant nose bleeds. She told the independent.ie that she comes “from a family of nose-bleeders.” It wasn’t a concern as a child, but as her dad lost his blood very rapidly, he was dependent on transfusions. He sadly died at 68 from complications from the condition.
Things became more serious during pregnancy, when she says there was constant risk of “blood vomit.” She had two children, both of whom regularly had unexplained nosebleeds. One day, the family came across the term Hereditary Hemorrhagic Telangiectasia (HHT) — the name for a condition that caused abnormalities in certain blood vessels and leads to bleeding in the nose, lungs, brain, spinal cord, gut and liver. The most common symptom was nosebleeds. Extensive medical tests confirmed the diagnosis.
Sadly, awareness of the condition and relevant surgeries were not enough to stop the tragic loss of Dara’s son, Paul, when a blood vessel in his lungs catastrophically ruptured. He was just 22.
This was the catalyst for the creation of HHT Ireland. Since 2012, Dara and her husband David have been “relentlessly fundraising and trying to raise awareness,” as she told RSVP live. They aim to better support affected families, and have also linked up with Rare Diseases Ireland and Rare Diseases Europe (EURODIS), an alliance with organisations in 70 countries. The website shares heart-wrenching stories of people in Ireland who have had their lives affected by HHT.
“10 percent of patients don’t suffer nosebleeds, and could have ticking time bombs on their brain or lungs and they don’t know until some day it could rupture,” she added to RSVP.
Dara’s brother, Michael MacGinty, also has the condition and was diagnosed at the same time as her. “Everyday life for me includes unexplained and regular nosebleeds,” he told the Irish Times. “Most of the time, these bleeds just happen with very little warning so shirts, pillows, bed sheets all get regular soaking. It’s all a bit inconvenient but at least I know what ailment I have and how to manage it.”Tags: HHT, Ireland, rare diseases