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15-01-2019, 12:49   #1
Boards.ie: Niamh
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Now ye're talking - to someone with Cystic Fibrosis

Welcome to our first first AMA of 2019 everyone!

Today's guest is a woman who has Cystic Fibrosis. It's a condition which requires constant monitoring and medication. Ireland has the highest incidence in the world of Cystic Fibrosis per head of population and also has some of the most severe strains of it. Our guest is here to answer your questions about her experience of life with CF.

What is Cystic Fibrosis?
Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1,300 children and adults in the Ireland (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend primary school. Today, advances in research and medical treatments, including in Ireland, have further enhanced and extended life for children and adults with CF. Many people with the disease in Ireland can now expect to live into their 30s, 40s and beyond. People with CF in Ireland are increasingly going on to attend third level colleges, accessing employment, and living more independent lives, with the support of family and friends.

Let's get the AMA forum off to a great start with some questions for Succubus_

[Info above is from Cystic Fibrosis Ireland]
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15-01-2019, 12:59   #3
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Hello! Delighted to see doing this AMA
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15-01-2019, 13:06   #4
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Hey. Thanks for doing this AMA. I lost two very young cousins to this illness so I’m delighted to see you kicking its ass.

What was it like for you growing up with CF?
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15-01-2019, 13:08   #5
Shoesdayschild
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Also, I read somewhere a while ago that CF seems to be an Irish disease, and became apparent around the time of the Irish famine. Is there any truth to that, do you know?
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15-01-2019, 13:13   #6
 
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Originally Posted by Shoesdayschild View Post
Hey. Thanks for doing this AMA. I lost two very young cousins to this illness so I’m delighted to see you kicking its ass.

What was it like for you growing up with CF?

Thank you very much for your question Shoesday



I'm very sorry to hear that you lost two very young cousins to CF. I feel very lucky to still be here and still doing relatively well as I know many others haven't been as fortunate.



I'm unusual in the sense that I was diagnosed with CF when I was fourteen, so I thought I was just like everyone else. Most people with CF are diagnosed as babies or small children. I did get frequent chest infections and colds as a child and I was misdiagnosed with asthma when I was thirteen because I started to have a chronic cough around the age of eleven. So, I suppose I had a pretty normal childhood in the sense that I didn't know I had CF and so I wasn't doing the heavy treatment regime that was needed. I got away with it in that sense
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15-01-2019, 13:26   #7
 
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Also, I read somewhere a while ago that CF seems to be an Irish disease, and became apparent around the time of the Irish famine. Is there any truth to that, do you know?

Oh thank you for this question, I haven't heard this before. We do have the highest incidence of CF in the world per capita (1 in 19 Irish people carry one CF gene) but it isn't an Irish disease.



I suspect we have such a high incidence possibly because we've been a bit more isolated on an island and so the gene pool is smaller. Also because CF is more common in white people though it is also found in other races, but it tends to be more rare.



We don't know exactly how long CF has been around but one of the genes I have (which is the more severe one, DeltaF508) is thousands of years old. People wonder why it has survived since it's such a deadly gene so there have been theories about the benefits CF can offer, such as being more resistant to typhoid fever and cholera. Though we don't know why it's more prevalent in Ireland then as that wouldn't have been a prevalent disease here compared to other countries.



CF wasn't officially recognised as a disease until the 1930s but in European folklore there was a saying “woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die”. I think that was in the 16th century or so. People with CF lose a lot of salt through their skin and often taste salty to kiss so this is what people must have realised.

Last edited by Ariadne; 15-01-2019 at 13:31.
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15-01-2019, 13:30   #8
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I have no question. Just want to thank Boards for this discussion and wishing Succubus and all those living with CF all the best.
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15-01-2019, 13:34   #9
harry Bailey esq
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So Id be wasting me time trying to sell you cheap tobacco so
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15-01-2019, 13:38   #10
 
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So Id be wasting me time trying to sell you cheap tobacco so

Well we're all human and some people with CF do smoke. I don't know how they do it because even if someone smokes around me outside I start to cough but maybe their lungs are in better shape than mine.
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15-01-2019, 13:38   #11
harry Bailey esq
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Hello everyone, I'm delighted to do the first AMA of 2019. Feel free to ask away about anything CF related
Fair dues cleo. It's a lot more common than people think so it'll help a lot of people
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15-01-2019, 14:13   #12
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Do you have to follow a strict diet or avoid certain foods, like maybe dairy?

Will you need a lung transplant at some point in the future or is that not the case for everyone with CF? I don't know much about the disease but would have read a bit in the media about Orla Tinsley being on the waiting list last year and eventually getting a transplant.
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15-01-2019, 14:22   #13
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Thank you Succubus for doing this AMA.

My sister was diagnosed with CF at the age of seven. She is incredibly active although her lung function fluctuates from time to time. I also have a friend who had a double lung transplant a few years ago and is doing very very well.

How does CF affect you physically?
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15-01-2019, 14:34   #14
 
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Do you have to follow a strict diet or avoid certain foods, like maybe dairy?

Will you need a lung transplant at some point in the future or is that not the case for everyone with CF? I don't know much about the disease but would have read a bit in the media about Orla Tinsley being on the waiting list last year and eventually getting a transplant.

Thank you for your questions Miamee

I should really avoid certain foods because I have acid reflux which is very common in CF. I take several different medications for it but it can still aggravate my lungs (the acid can leak into the lungs and inflame them) and make me cough which makes me vomit at least a couple of times a week. It's usually brought on if I eat something or climb the stairs, if a coughing fit is brought on really. With reflux you're supposed to avoid a lot of foods, like spicy food, onions, chocolate, garlic, tomatoes, caffeine and alcohol. I try to take it easy on the alcohol and spicy foods but that's about it. I find it too restrictive to cut out all of the above foods. I haven't noticed any food that particularly makes my lungs worse but my lungs are definitely more productive (produce more mucus) the day after I drink alcohol.


Most people with CF need a lung transplant at some point really, so I will need one in the future, though nobody can tell me when. My lung function is 51% when well and you're generally referred for transplant when it reaches 30% so it really just depends on how quickly or slowly my lungs deteriorate. For example, when I was 19 my lung function was brilliant, it was 93% at best, now 11 years later it's 51%. So the main thing is to do as much treatment as possible to try to slow down the deterioration and that's about all you can do really. It's brilliant that Orla got her transplant and that it generated so much awareness of CF and organ donation. I've heard it's like a new lease of life for people getting new lungs, though it comes with its own complications.
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15-01-2019, 14:40   #15
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Is there exercises or physio that you have to do to keep your lung function up or is it more down to how you take care of yourself (medication not smoking/drinking)

Did you know anything about the illness before you were diagnosed yourself?

I enjoy reading your posts across boards and notice you always tend to be in good humour, and pretty positive. How do you keep yourself in such good form, considering you have a life changing condition?

(Sorry for all the questions)
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