LETTERKENNY man Michael MacGinty, who suffers with a rare blood disease, has shared his story to mark Rare Disease Day. He highlighted the importance of having a conversation about rare diseases, which he says are not as rare as rare sounds.
Michael suffers with Hereditary Haemorrhagic Telangiectasia (HHT) a rare genetic condition which affects the body’s blood vessels. In the case of the MacGinty family, four out of the five siblings have inherited HHT, a disorder that can cause profuse bleeding.
Overexertion, getting too hot or even a spicy curry can all trigger nose bleeds – a common occurrence for their family, including their father. The family weren’t diagnosed with HHT until after they saw Mike Nolan a bereaved father telling the story of his daughter’s rare blood disorder on the Late Late Show in 2002. The Nolan family’s experience sounded all too familiar. This pushed the MacGinty’s to get tested for HHT.
In 2004 Michael’s father Paudric unfortunately passed away after spending most of his life not knowing what was causing his frequent bleeds. Michael’s nephew Paul also inherited the disorder. He sadly died at 22 years old after suffering from a traumatic bleed in his lungs. Paul’s passing led his heartbroken mum Dara to set up the support foundation HHT Ireland.
Michael’s nephew Paul Woods, his passing led his heartbroken mum Dara to set up the support foundation HHT Ireland.
“Out of the estimated 1,000 HHT patients in Ireland we have now connected with approximately 250 to 300,” Michael added.
While HHT Ireland’s target is to make all 1,000 people in Ireland aware of the disorder so that they can seek the right treatment, Michael has another mission.
He wants to raise awareness of HHT amongst healthcare staff, so they too can recognise the warning signs and learn how best to treat future patients.
Michael MacGinty and his wife Edel during his stay in Letterkenny University Hospital last October, when he suffered a stroke as a result of his rare blood disorder HHT.
During a recent stay in Letterkenny University Hospital Michael volunteered to act as a ‘guinea pig’ for medical students and staff who were eager to learn.
They were blindly presented with the patient (Michael) who had presented to the emergency department whilst suffering from a stroke which was caused by his disorder.
As part of the learning activity students and staff were not made privy to the patients past medical history of HHT, but Michael was more than happy to allow the staff to probe him to see if they could correctly diagnose his disorder. Most of them couldn’t.
This immersive learning experience was initiated by Dr Parihar, who Michael couldn’t praise enough.
“Mr Parihar commands authority without making any noise; he leads by example rather than telling people what to do. He gives staff the opportunity to assess patients and come to their own conclusion.
“I hope he doesn’t leave Letterkenny because we are so lucky to have him,” he added.
When Michael was initially rushed to hospital in October 2022, before the poking and proding began, he ended up under the care of Dr Parihar and his team.
They worked wonderfully together as a fast acting team, with the Consultant Neurologist Dr Ling and the Stroke Team under Dr Memon, doing numerous tests, CT Brain Scan, MRI, Angiogram Cardiac Scans, Blood Tests, Endoscopy and much more.
All whilst observed by Dr Morrell in Letterkenny’s Haematology Department, who also liaises with Dr Adrian Brady Intervention Radiologist at Mercy Hospital in Cork, the foremost expert on HHT in Ireland.
This was all done in order to determine the best approach to the current challenge and to build up a picture of Michael’s AVMs (Arteriovenous Malformations), to map out the bleeding or potential bleeding points.
This initiative by Dr Parihar will help the team when the patient presents in hospital again with a bleed or stroke.
This forward thinking care at LUH is a testament to the medical staff, who manage to stay calm and work efficiently whilst faced with so many challenges, between overcrowding and Covid.
As a patient Michael found the care in hospital was exceptional, “from the doctors to the Nursing staff to the Catering and Domestic staff and the Day Services unit- they were all fantastic,” he said.
No stones were left unturned, no follow up was missed, and no tests were forgotten about. The result is that Dr Parihar and his team are ready for the patient when they present again, something that is likely to be lifesaving on the next visit.
Michael has recovered very well following the stroke. He thanked his wife Edel for her quick response and constant support.
Michael is 62 years old, he said he would like to get another 20 years. “But I’ll get what I get, that’s just the way it is,” he added.
“I try not to worry myself to death about it, I have had phases where that has happened, where I would get worried about those I would leave behind.”
But now that his children have grown up and ‘flown the nest’ this has become less of a stress.
“I’m now more inclined to get on and enjoy life,” he added.
Michael spent his weekend visiting his children in England and enjoying a few pints whilst watching the rugby.
- For more about HHT see their website at https://hhtireland.org/ especially if you have unexplained bleeding, even nosebleeds.
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