As far back as I can remember life has been bloody. My earliest memories of my grandmother constantly clutching a handkerchief that was bloodstained, swapping it out for another one every so often. It was simply part of her life and therefore part of our lives. And she lived until her mid-eighties. Everyone simply accepted that she had unexplained nosebleeds. Probably because she remembered her two uncles having the same issue when she was a kid. They used to arrive at the Market in Castlebar from their Islandeady farm clutching blood soaked rags to sell their wares.
So it was no great surprise that we, as kids, grew up in a house where our own father also had blood-soaked cotton handkerchieves all over the house and in his coat pockets, in his car, by his bedside, everywhere. As he got older his bleeding got worse, but because it was gradual it was sort of accepted. “Sure he is just like his mother.” Tisues took over from cotton, thanks to Kleenex Mansize.
However, in 2002 my father saw an interview on the RTE1 Late Late Show with Brendan O’Carroll and a guy called Mike Nolan who told the story of Grace his beautiful nine-year-old daughter who had died of HHT, a vascular disease.
My father realised this HHT condition was exactly what he was suffering from and told my little sister Dara. As a result of this, some of our family members attended the Mercy Hospital in Cork to undergo screening and genetic testing to see who had the HHT gene. A Specialist Centre had opened there in early 2002, under the very committed interventional radiologist Dr Adrian Brady, as a result of the efforts by Mike Nolan to create one. Grace left a wonderful legacy in Cork. And Dr Brady, supported by his wife Margaret, keeps that going. They screen families for HHT every month, in their own time. This is the first port of call when someone thinks or their GP thinks that they might have HHT.
Tragically, Padraic our father died in August 2004 as a result of continued complications from HHT at the age of 68. And after a fiersome struggle for his last years, as he volunteered to undergo many procedures, in order to help his kids learn how to mitigate the effects of HHT.
My sister Dara and myself were diagnosed in Cork as having HHT. As was our kid brother Padraig. My eldest nephew Paul (13) was also diagnosed with HHT in Cork as was his little sister Katie (12). As well as having bleeding points in our noses, we also have some points or AVMs in our lungs that are susceptible to bleeding. Some of these points had to be embolised in Paul’s case. And even though he was being monitored and checked, in June 2012, aged only 22, having just graduated from college and away in Paris on his first big holiday, Paul died due to a Traumatic bleed in his lung.
As a result of this tragic early death, Paul’s mother Dara Woods set up HHT Ireland. Dara is determined to help people with HHT get a diagnosis. Along with supportive husband David, she started a campaign of Awareness nationwide and works tirelessly to ensure that people get to hear about this silent killer. Otherwise people with HHT get misdiagnosed or treated incorrectly and this can have tragic repercussions. The good news is that when you know you have HHT you can be treated and monitored although you cannot be cured. Life can be much better when you know what you are dealing with and get treated accordingly.
Everyday life for me includes unexplained & recurrent daily nosebleeds. Most of the time these bleeds just happen with very little warning so, shirts, pillows, bedsheets – all get a regular soaking. And yes I get some odd looks when it happens in public! Or on Zoom.
This is all a bit inconvenient, but truth be told, everybody has something, some bit of a cross to carry. At least I know what ailment I have and how to manage it.
And whilst there is also the possibility that HHT will cause much more serious problems in the future, for now it’s usually no more than that, an inconvenience. Unexplained seizures in 2020 leading to a broken back and then a stroke in October 2022, mean that I am acutely aware of my condition. So I do not ignore it. I have a daily drugs diet to manage strokes and bleeding. Every so often when the nose bleed points get bad I have Sclerotherapy, a rather invasive injection treatment to close off the bleeding points, one by one. It is not very pleasant, but it really helps reduce the bleeding. I have this treatment because I am aware of having HHT – knowledge is power, if you can make use of it well.
In my own family we have four wonderful children and one, our 22 year old boy has HHT – a gift from Dad. But that same kid plays senior rugby and is very definitely the ‘Jock’ in the house. So, other than inconvenient nosebleeds like myself, he lives a very normal life and does not let HHT get in his way. Note: Children have a 50:50 chance of inheriting HHT from a parent with HHT which is an Autosomal gene.
If I had one wish it would be that every person with HHT would become aware that they have it. At least one person in every 5000 has HHT and the aim of HHT Ireland is to connect with those 1000 to 1200 people in the country with HHT. Together we can end HHT in one generation. Advances in technology ensure we can remove the gene, if that is acceptable to a HHT family. There is light at the end of this tunnel.
The most common symptom of HHT is profuse nosebleeds. So if you read this article, and you know someone who gets regular unexplained nosebleeds ask them to check out www.hhtireland.org to see if their symptoms match HHT.
Apart from the bleeding inconvenience, life is pretty bloody good.