“A nosebleed. Annoying, inconvenient & perhaps a tad embarrassing”
How a nosebleed began a personal journey
But to a sufferer of Hereditary Haemorrhagic Telangiectasia (HHT) – it is not to be ignored.
Last Thursday was Rare Disease Day (28th Feb) , the objective of which is to raise awareness of HHT & Rare Diseases with Policymakers & the Public, and tell of the impact on the lives of Patients.
Gerard Murray & his wife Shirley recently spoke to Alison Comyn of Drogheda Independant. They live in Ashfield, Drogheda and they are now all too familiar with a rare hereditary condition which affects 1 in every 5000 persons.GerardMurray
It was their unborn son who alerted them to the genetic disorder, which they were both to live with for the rest of their lives.
“I was actually 6 months pregnant with our son Thomas, when he had a massive seizure in the womb” explains Shirley.
“I actually thought he was going to burst out of my stomach, and through scans they were able to tell he had bleeds on the brain – but no idea why it happened”.
That was almost 15 years ago and even though Thomas has suffered no ill effects from the bleed, Drs were never able to explain why it happened.
And then his father Gerard suddenly collapsed at home in 2010.
“I was 38yrs at the time, fit, healthy and training for the London Marathon” explains Gerard, who retired from Irish Cement for health reasons.
“It turned out I had multiple clots in both lungs and that’s when Drs started joining the dots.
Gerard has suffered from nosebleeds all his life and now his young son was experiencing the same.
“My sister rang me. Her GP had noticed red spots on her lips & hands and she was diagnosed with something that dated back to 1909 medical journals called Osler-Weber-Rendu Syndrome” he says.
“I checked my hands, and yes i had them too! It wasn’t until I saw a specialist in Cork that I found out that I had Hereditary Haemorrhagic Telangiectasia (HHT) and I had just been told I had a weak nose as a child!”
Despite having two strokes, the effects on Thomas were minimal and both he & his Dad can manage the condition.
“We didnt know for years what was wrong, and educaiton is key” adds Gerard.
“If you’re having lots of nosebleeds or have tiny red spots on hands or lips, tell your GP and don’t be fobbed off too easily”
Find out more on www.hhtireland.org
Full article: http://droghedaindependent.newspaperdirect.com/epaper/iphone/homepage.aspx?fbclid=IwAR3iprxFpiOoXxjyf9kg_q8sDryP-9bgdw6hGy0_s69LjcKKYOverwtYc3g#_article678dd1ae-9814-4d49-acaa-eda39e162804/waarticle678dd1ae-9814-4d49-acaa-eda39e162804/678dd1ae-9814-4d49-acaa-eda39e162804/0/true
