Carrick woman tells of ‘devastating impact’ of living with Hereditary Haemorrhagic Telangiectasia
An east Antrim woman has told of the “devastating impact” of living with a rare and often undetected genetic disorder that affects the blood vessels.
This year alone, Sharon Gregg, from Carrickfergus, has went through countless blood transfusions as part of her battle with Hereditary Haemorrhagic Telangiectasia (HHT).
She was first diagnosed with HHT ten years ago after she collapsed with near-fatal blood clots in her lungs and legs. “This condition has turned my life into a constant battle, one that I share with countless others, many of whom don’t even know they’re fighting it,” Sharon said.
"HHT is an inherited disorder that affects blood vessels, causing them to form abnormally. For those of us with HHT, this means frequent, unexplained nosebleeds and the appearance of red spots on our skin. But the real danger lies inside, where arteriovenous malformations (AVMs) – tangles of abnormal blood vessels – can form in vital organs like the lungs, liver, brain, and uterus. These AVMs can cause life-threatening haemorrhaging, and for many, the strain on the body becomes too much to bear.”
Since her diagnosis, Sharon has spent countless days in hospitals, battling severe haemorrhages. “The bleeding has been so relentless that I needed an urgent hysterectomy to save my life. Ironically, my particular strain of HHT also causes blood clots, requiring me to take blood-thinning medication – an agonizing balancing act between preventing clots and managing bleeding.
“The impact of HHT is devastating, not just for the individual but for entire families. I lost both my father and my only brother to this cruel disease before they had the chance to be diagnosed. We grew up thinking that unexplained nosebleeds were just a part of life, not realizing the silent danger lurking in our bodies.
"What’s terrifying is that 90 percent of people with HHT are undiagnosed. They are living with a ticking time bomb, just as my family did, unaware of the threat posed by undetected AVMs. This is why raising awareness is not just important – it’s vital. We need to reach those who don’t yet know they are at risk, get them the genetic testing and support they need, and ultimately, save lives.”
HHT Ireland is at the forefront of the fight, but the charity needs urgent help to raise awareness of the disorder. “Frequent iron infusions and blood transfusions are what keep many of us alive as our bodies struggle to cope with the constant loss of blood. The bleeding becomes more intense, more life-threatening, as the disease progresses. Without the generosity of blood donors, people like me wouldn't be here today,” Sharon added.
The local woman is currently raising funds through JustGiving for HHT Ireland, for whom she is a volunteer.
"If you have the ability, please consider donating blood – it’s a lifeline for so many of us,” she said. “And if you know anyone with a family history of unexplained nosebleeds, strokes, or haemorrhages, please encourage them to contact HHT Ireland. Early diagnosis could make all the difference.”