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GENE THERAPY HAS been used to treat a person with haemophilia for the first time in Ireland, the Irish Haemophilia Society has announced today.
The person received the therapy as part of a clinical trial.
The society hailed it a major breakthrough and said it would have a major impact on the quality of life of people with the condition.
Haemophilia is a genetic condition where a person’s blood doesn’t clot properly, meaning they can bleed much more profusely.
Since the 1970s, the standard treatment for haemophilia has been regular injections of the missing clotting factor – usually managed by the patient themselves.
The new gene therapy helps the body independently produce the clotting factor, providing continuous bleed protection.
“This is a momentous occasion for the haemophilia community in Ireland”, Irish Haemophilia Society Chief Executive Brian O’Mahony said.
“In the past, viruses such as HIV and Hepatitis C decimated the haemophilia population in Ireland through contaminated blood.”
Dr Niamh O’Connell, National Director of the National Coagulation Centre at St. James’s Hospital, said:
Having your own liver producing a continuous level of factor is a real game-changer versus the treatments we currently have.
O’Mahony added: “In the coming years, you might start to see people actually being changed from having severe haemophilia into mild, or even normal factor levels. So it’s quite exciting.”
More trials are needed before the gene therapy becomes more widely used.
“There’s still lots to be learned. And I think the clinical trial setting is the way that we manage to get the benefits of new treatments in a safe environment, while gathering all of this information and data that helps us to improve the next round of studies,” Martina Hennessy, Director of the Health Research Board Clinical Research facility said.
There are a number of people enrolled for the current trial, and there are further trials about to open for other forms of haemophilia.
The trials were an academic collaboration between Trinity College and St James’s Hospital, and are funded by the Wellcome Trust in the UK and the Health Research Board in Ireland.
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Somebody should start a crowd fund for this poor poor woman, she should know that the public believe she was wronged, deserves redress and support! If it’s done I’ll be donating, I can’t imagine how she feels right now.
Why dont you go ahead and do and post the link back here. I’ll donate
I’ll donate what I can.
I would love to but ashamed to say I’m to much of a coward to take on the responsibility for it however I’m going to ask the author of the piece if they can find out if there’s somewhere we can make donations to support these victims. I couldn’t imagine what this is doing to this poor woman’s generaL health!
Horror story from the dark ages, you’d certainly hope so.
To think that this procedure was banned in France in 1798 … Holy Catholic Ireland should hang its head in shame . The suffering that poor woman went through !!
The way these women are being treated is absolutely disgraceful. is it not bad enough that they were treated so badly at the time and that they have suffered so much since? .
I’ll happily donate to a fund set up for this woman & victims of this barbaric practice in general. It’s bullshit that this was a good option in the 1950s! The same procedure was outlawed in Paris in 1798 as it was deemed barbaric. Yet some religious nut (Dev jnr amongst others) thought this was a great way to ensure a woman wouldn’t need those pesky c sections so she could go on and have loads of babies! In all fairness considering women were left incontinent and could barely walk and were in constant pain why on earth would you ever even consider getting pregnant again! I hope these women get the justice they deserve. They were butchered somebody is accountable!
Outrageous.
It means any incompetent can can claim he/she “had reason to believe that the procedure did not generally have adverse effects”, even if he didn’t have a clue or was motivated by other than medical imperatives.
I hope this is appealed.
I really hope this is appealed.
It’s like saying that when the Brothers and nuns beat the crap out of you years ago ‘it was the times that was in it’
You either have empathy or you have not. Breaking a woman’s pelvis, how could a trained Doctor ever have thought it was ok. ‘ oh that was the times that was in it’
Did those doctors ever go to bed at night and wonder what it would be like to have their pelvic bone broken!
No tears from Enda?
Oh wait, the State defended this case…
Europe I hope.
The new hep c. Wonder what Michael Noonan will have to say.
has the health minister made a statement? or is he too busy speaking on every other ministers remit?
Exactly what I thought when I heard it tonight Anne Marie. I can’t believe this poor woman lost her case. It’s barbaric. So sorry to this brave lady
I wonder how many hours of research the defending side took to ‘prove’ that doctors didn’t know this was barbaric? Surely the fact that it was later proven to be barbaric is enough? Guess they were told to hold flood gates closed until a few more victims have passed on.
This is what happens when you have a compliant passive people , this woman could be any of our mothers or grandmothers , it’s a disgrace, does anyone know how to start a crowd fund for this woman or who she is , we need to get off our arses and get rid of the establishment .
Deliberately break a woman’s pelvis in an operating theatre today and what would happen .
State rules again. That poor woman. The psychological trauma of reliving those events day in day out to a packed court room. How that judge can sleep tonight I don’t know. His hands are not tied. He is a judge. The state already offered every woman €50,000, and that was without a trial. How is it now that the judge can award nothing? Something is amiss.
Money waisted, paying lawyers yet again, while the victim isn’t redressed, enough is enough, we know these procedures shouldn’t have accrued, compensate them, ensured their health going forward , pay top class health insurance for them, and refund any expenses they have receipts for, above all in this cost conscious world stop waiting money on the courts
The judge’s reasoning was that, while it may seem unnecessary and barbaric now, at the time it was standard and accepted procedure given the knowledge available.
Make of that what you will but his hands seemed tied to some extent.
The problem with that reasoning though is that there was an alternative less damaging procedure available that they did know of but refused to use as it would mean limiting the amount of children the women could have which was against the Catholic ethos. I don’t think it took a lot of knowledge to know that a caescarean would do less damage to a woman’s body.
France outlawed the procedure in 1798 I think… that would suggest they were well ahead of us in figuring out what was barbaric. Beyond ridiculous result for this case.
Sarah you say France outlawed the procedure in 1798? This was also stated above in a post. So 217 years ago, before the advent of modern medicine, you are saying this procedure was outlawed by France? I think this highly implausible. How did they perform this procedure in the absence of anaesthesia, no knowledge of germ theory and no antiseptics? Would you lie there while your pelvis was sawed apart. I doubt it. How is this statement true?
Whether you think it’s implausible or not John R it’s true.
http://www.thejournal.ie/symphysiotomy-un-1355549-Mar2014/
Look it up yourself if you still think it’s implausible .
Inexplicable.
I have nothing but sympathy for this poor woman being tormented still because of this barbaric practice.
On a side not – and as a woman of almost this age – those hands in the picture belong to at least a 90 year old
Just like Noonan and the Hepatitis case. I feel very sorry for this poor lady.
If that’s the law then the law is surely an ass. How can it possibly be right for our government to oppose these cases?
Folks there is a survivors assistance fund you can donate here http://symphysiotomyireland.com/funding-appeal-from-survivors-of-symphysiotomy/
What type of monsters thought up and allowed symphysiotomy and why did it take so long to recognise that it existed?
State / Judiciary ????
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