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New haemophilia drug a “life-changer” for Killarney man

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By Michelle Crean

A groundbreaking new drug could soon be on the market for haemophilia patients across the world as a Killarney man's clinical trial has dramatically changed his life.

Brian O'Mahony (62) - who has lived with the condition for over six decades - this week told the Killarney Advertiser that as a sufferer whose life has been severely impacted by the condition - the success of the drug "is life-changing".

Currently Chief Executive of the Irish Haemophilia Society, Brian from Dalton's Avenue is the only Kerry man - and only one of three in the country and just one of 54 globally - taking part in the trial. It's hoped that the drug which is only suitable for adult sufferers, could be on the market as early as 2022.

For Brian, having haemophilia, which is a bleeding disorder as a result of the body missing the Factor IX protein which helps clot the blood, meant injecting himself twice a week to keep his levels regular.

An active life meant taking extra doses to keep his health in check as bruising, falls or knocks could mean bleeding which he'd be unable to control and may see him hospitalised.

CLINICAL TRIAL

Brian jumped at the chance to take part in the new gene therapy trial earlier this year and it's been such a success that he now no longer has to inject himself.

"I have severe haemophilia," Brian told the Killarney Advertiser.

"I was taking the injections twice a week and that gives you an increased Factor IX. I would have done a lot of international travel up until this year and you're looking at your activities."

The new therapy, he explained, is a virus injected into the body.

"In order to get DNA into the system they give you a virus in an intravenous injection, a large dose into the body. This infusion of the matter goes into the liver cells. Prior to this my Factor IX was less than one percent. Now I'm near the normal range. I haven't had to take an injection since February. This is a functional cure. I've had no bleeds since and I'm fitter and healthier. It's life-changing."

Brian, former President or the World Federation of Haemophilia Organisation and President of the European Haemophilia Organisation, says there's 800 sufferers with the condition in Ireland - 270 who have a severe form.

He hopes the therapy will last 10 years or even a person's lifetime.

"Hopefully this will light the way forward."

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Weird and wonderful insurance policies

As it is January I thought I would start the year on a light hearted note. Lloyds of London is an insurance marketplace founded in a London coffee shop over 300 years ago. Today it is the world’s leading market for specialist insurance, from large maritime risks to space satellites. Here are some of the […]

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As it is January I thought I would start the year on a light hearted note.

Lloyds of London is an insurance marketplace founded in a London coffee shop over 300 years ago. Today it is the world’s leading market for specialist insurance, from large maritime risks to space satellites.

Here are some of the more interesting and obscure insurance policies put in place over the years.
· David Beckham insured his legs with Lloyds for £100m in 2006

· Dolly Parton has insured her 40dd breasts for £3.8m

· Rolling Stones guitarist Keith Richards hands are insured for $1.6m

· Michael Flatleys legs were insured for $47 Million. The policy was only in effect when he was touring and forbade him from dancing except on stage.

· James Dean took out a life policy for $100,000 just a week before his tragic death at the age of 25

· The actor Richard Burton purchased a 69.42 carat diamond from Cartier for $1.1 Million in 1969 as a gift for Elizabeth Taylor. It was the world’s most expensive diamond at the time. Once Lloyds had insured the diamond they specified that Taylor should wear it in public for only 30 days a year and even then be protected by security guards. The diamond was sold in 1978 for an estimated $5 Million which would equate to roughly $19 Million today.

· According to novelist and inventor Arthur C Clarke, director Stanley Kubrick wanted to take out insurance with Lloyds to protect himself against losses in the event that extra-terrestrial intelligence was discovered before his movie, ‘2001: A Space Odyssey’ was released. Lloyds refused to quote for this one.

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Kerry to feature in new TG4 documentary on Wild Atlantic Way

Three episodes of a new ten-part TG4 series on the Wild Atlantic Way were filmed in County Kerry. The series, which started last Wednesday night this week, and continues every Wednesday for the next nine weeks, follows the Wild Atlantic Way from Donegal to Kerry. In this series ‘An Cósta Thiar’, presenter Áine Ní Bhreisleáin gains […]

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Three episodes of a new ten-part TG4 series on the Wild Atlantic Way were filmed in County Kerry.

The series, which started last Wednesday night this week, and continues every Wednesday for the next nine weeks, follows the Wild Atlantic Way from Donegal to Kerry.

In this series ‘An Cósta Thiar’, presenter Áine Ní Bhreisleáin gains an insight into the culture, challenges and benefits of living by the Atlantic and to find out if seawater still flows through the veins of its coastal communities.

On her travels, Áine will meet with the people of the coast, both young and old. She will spend time in the company of people who live and work by the sea, learning more about the attraction of these areas, and this life, through their eyes, stories and experiences. She will meet those communities and people who have a strong affinity with the coast and the sea, through new businesses, traditional livelihoods, recreational activities, ecology, birdwatching, eco-tours, swimming, boats (of all kinds) and more.

Áine began her journey at home in Gaoth Dobhair and heads to the wilds of Árainn Mhóir on the second leg of journey.
The third show platforms south Donegal while in week 4, Áine heads to the beautiful Achill Island.

Half way through her journey from Donegal to Kerry, Áine is in Carna in Conamara while in the the sixth programme, Áine continues her journey on the Galway coast, this time in Cois Fharraige

Áine visits Inis Oírr in the seventh programme, the smallest of the three Oileán Árainn, to explore how life has changed for islanders in recent generations through fishing, farming, tourism and sport.

In programme eight, Áine continues her journey, heading for the West Kerry coastline this time around, rowing with a local musician, Breanndán Ó Beaglaoich, a boatbuilder Eddie Hutch and even All-Ireland champions in Cumann Rámhaíochta an Daingin. She investigates the attraction of sea swimming for local women with local group ‘Snámh for the Soul’ goes foraging and paddleboarding with a woman who lives and breathes the sea and all it has to offer, Susan Feirtéar.

In the penultimate programme, Áine continues on her journey around the Corca Dhuibhne coast, exploring the history of trade in An Daingean with Brenda Uí Shúilleabháin and how the coast inspires artists with the talented Tomáisín Ó Cíobháin. She takes a class with local yoga instructor, Ails Ní Chonchúir and heads out to sea with local guide, Eoghan Ó Slatara, to learn about the islands on the west Kerry coast and she tastes some local seafood but she has to cook it first at the Dingle Cookery School.

Áine ends her journey in Uíbh Ráthach, in South Kerry. She gains a different perspective on the sea while snorkling with Gráinne Ní Ailín from Sea Synergy and surfing with Cian O’Connor, explores the long history of this coastal community from the time of the Milesians with poet and historian, Paddy Bushe, and learns about the Seine boat with a local TikToker, Séaghan Ó Suilleabháin, better known as The Kerry Cowboy, and is there a better way to finish her journey than a first visit to the majestic Sceilg islands?

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