Cystic Fibrosis Unit - Will Joe Duffy get it started this time?

Mushy wrote: »

From my understanding of being told about this sort of thing, CF patients in other countries, if they dont get a private room, they are in with other people who have CF. This minmises the risk of more threatening diseases transferring between patients. However, that doesn't happen here.

This is definitely preferable, but there is still a high risk of getting infections.

The underlying factor about CF is that the mucus buildup essentially creates a breeding ground for bacteria. It's not necessarily the infections that are caught, but the infections that are created in the lungs themselves.
This is manifestly disconnected from lung transplants. Lung transplants are needed in CF cases eventually regardless of exposure to infections.

The nature of the disease is scarring (fibrosis) of the cysts in the pancreas - but also there is difficulty releasing sweat from the body and abnormally viscous mucus.

So basically 80% of patients die from lung related problems, be it lung disease or difficulty breathing.

Howard the Duck wrote: »

Well paying for private insurance isn't an option for someone with CF. Also who ever mentioned a CF Hospital? A Proper CF ward would be enough. There are roughly 1100 people with CF in Ireland not all of whom need regular IV treatment in hospital. Also they all don't attend the same hospital.

The frustration people with CF and their families feel is because this is something that has been promise and is something they should have gotten when we had the money to build it.

People may slag off Joe Duffy but he is doing something really good here and it's something that would make a massive difference to people suffering from cf.

I should have been more clear. I meant that in order to protect people with CF from all infections that one can encounter in the hospital, we'd need more than private rooms - we'd need a whole hospital just for people with CF that was cleaned all day every day... and even THEN the infection rate would be insurmountably high.

Also, of those 1100 people, the majority (if not all) will eventually need to spend lengthy time in the hospital.

OisinT wrote: »

I should have been more clear. I meant that in order to protect people with CF from all infections that one can encounter in the hospital, we'd need more than private rooms - we'd need a whole hospital just for people with CF that was cleaned all day every day... and even THEN the infection rate would be insurmountably high.

Also, of those 1100 people, the majority (if not all) will eventually need to spend lengthy time in the hospital.

The point is that a CF unit would drastically reduce the number of infections caught by people with CF. You can never protect people from all infections unless you start putting them in plastic bubbles but there can be measures taken which aren't being taken now and that is the point.

What exactly are you arguing? Do you believe a CF unit should not be built and everyone should stop moaning about it?

OisinT wrote: »

I should have been more clear. I meant that in order to protect people with CF from all infections that one can encounter in the hospital, we'd need more than private rooms - we'd need a whole hospital just for people with CF that was cleaned all day every day... and even THEN the infection rate would be insurmountably high.

Also, of those 1100 people, the majority (if not all) will eventually need to spend lengthy time in the hospital.

I think you are wrong there. A CF hospital is not necessary, a decent clean hospital and ward is adequate. There is no need to go over board on the cleaning. Besides, hospitals should be cleaned every day, for every patient and staff member. Describing the infection rate as insurmountable is wrong. Its not insurmountable. With adequate cleanliness, isolation and care even serious infections are treatable. Granted, some people will succumb but this is a combination of having the most serious form of the disease and picking up infections on a regular basis.

You are also wrong about your last line. Some (lucky few) patients with a mild form of the disease (due to a rare form of the CF mutation) can mange to avoid regular or lengthy stays in hospital. This due to the excellent care of the team in Vincents and a very pro-active attitude on the part of the patients: regular exercise, compliance in taking their medication and recognising the early stage of a cold or infection.

Here's somebody doing something to raise awareness and funds for CF.

http://bocktherobber.com/2010/10/shaving-joe-for-cystic-fibrosis

Support him if you happen to be around Limerick on Sunday 24th October.

Now now.

OisinT I have already asked you to tone it down a bit. No need for the tone.

I understand that this is an emotive subject, Please respect each other.

Micky Dolenz wrote: »

Now now.

OisinT I have already asked you to tone it down a bit. No need for the tone.

I understand that this is an emotive subject, Please respect each other.

There is no tone from me. I have been on topic since the warning earlier in this thread. It is clearly Kaaatelyn that wishes to continue to drag this thread off-topic.

Since CF is an autosomal recessive disease that requires 2 sets of gene deletion, I find it hard to see why so many of these people continue to bring children into this world knowing full well that they will have CF.

If 2 effected carriers have a child, that is a 100% chance of that child being an effected carrier.

If 1 effected carrier has a child with a non-carrier then there is 100% chance that the child will be an un-effected carrier.

If 2 un-effected carriers have a child, then there is a 50% chance of the child being an uneffected carrier and a 25% chance of the child being an effected carrier.

If an effected carrier has a child with a uneffected carrier 50% chance of being effected carrier and 50% chance of being uneffected carrier.

The point is pretty clear - the reason Ireland has such high rates is that there is no education (or care) on how CF is passed along and to what an alarming extent it is passed along.

These CF patients will die early, full stop.

Now should we be pumping our time and money into getting these people an extra 3-5 years, or should we be using the money to research feasible cures such as gene therapy.
We should also be putting CF patients on prophylactic antibiotics.


The simple fact I was making earlier which has been wholly ignored by certain posters is this: Ireland's CF survival may be lower than other first world countries, but it's not much lower. These people are kidding themselves if they think that CF patients are living to 50 or 60 in other countries.
Children born in the past 5 years have life expectancies in their 40s in the North America due to new treatments, but there is no evidence to state that Irish children born in the last 5 years do not share a similar expectancy.

It has to stop somewhere, and education to prevent these carriers from having children is a start. It's impossible to take care of the number of CF patients we have in this country when people are having more every year.
I remember hearing one guy on Joe Duffy say he has lost 4 children to CF and he is still having more. Ridiculous and irresponsible behaviour - this man is, IMO, essentially a child abuser and almost a murderer for continuing to bring children into the world that have a 100% chance of dying of a horrible disease such as CF

kiwikid wrote: »

this post is disgusting. This poster should be banned, moderator or not. i have reported this post.

I'm sorry you find science so disgusting. Perhaps if more people understood the disease and how it's spread the conversation could be carried out with less vitriol and emotion.

If it is my opinion that you find so disgusting then that's fine - disagree with it. But in my view, to bring a child into the world which you are fully aware will die of a debilitating and horrible disease, and you continue to do so then the state should step in to prevent this.

The state already steps in where cases of Anencephaly arise. Many parents wish to bring these children into the world regardless of the fact that they are not going to survive even a few days - a few days in agony.
Doctors and the state intervene in this circumstance to prevent the live birth.

OisinT wrote: »

I'm sorry you find science so disgusting. Perhaps if more people understood the disease and how it's spread the conversation could be carried out with less vitriol and emotion.

If it is my opinion that you find so disgusting then that's fine - disagree with it. But in my view, to bring a child into the world which you are fully aware will die of a debilitating and horrible disease, and you continue to do so then the state should step in to prevent this.

The state already steps in where cases of Anencephaly arise. Many parents wish to bring these children into the world regardless of the fact that they are not going to survive even a few days - a few days in agony.
Doctors and the state intervene in this circumstance to prevent the live birth.

Are you advocating abortions in cases with an invitro diagnosis of CF? Why not for any difference, no matter how slight. You really are a repugnant individual.

In the case of Anencephaly, their is very little actual brain matter, their is no conscious thought or brain activity. Are you really equating the two?

Mods, can we not ban this troll from the forum?

Anyone with CF is usually fully aware of the possibilities of having children with CF, the care teams are very careful to emphasise this. If parents are tested and both are carriers, then they are usually advised NOT to have children. If one is a carrier, the chances are about 1 in 450 births, a rate comparable to some other possible birth defects and genetic mutations.

Micky Dolenz wrote: »

OisinT, do not post in this thread again.

Sorry - was writing the post when this was posted.

I'm sorry so many people disagree with my opinions - it was not my intention to insult anyone, but clearly emotions are high for those who have CF or know someone with CF.
Certainly it was never my intention to cause pain or suffering to those people by my words or opinions on the subject.

It's amazing. When he's trying to intimidate other posters, his behaviour is tolerated, and yet, when he asks the difficult, provocative questions, he gets banned.

What is going on with this board?