Cystic Fibrosis

Sleepy · 16-05-2006 03:25PM #1

A friend of mine just found out her son has Cystic Fibrosis. I'm posting here because it's not really a PI. The reports I'm finding on-line are pretty contradictory so I'm hoping someone on here may be able to give me some more real-life information. Is this a disease that can be controlled with medication these days or has my friend's son no chance of any sort of 'normal' life?

Kiera · 16-05-2006 03:38PM

Physio is a great form of relief for anyone with CF. I used to be a chronic Asthmatic and was in hospital a lot when younger. There were two kids in there with CF who had heart and lung transplants (last resort). They found physio great(lie the child over your lap and pat on his/her back to loosen the phlegm. Make sure you have a towel or tissue ready. This clears the lungs up for a while for the kid. Swimming is also good exercise for the lungs. I’m actually not sure about the meds for this but I do know that the above is great relief.

r3nu4l · 16-05-2006 03:42PM

Go here.

http://www.cfireland.ie/welcometo.html

I would be careful of taking advice from anyone other than this association or a health professional (not someone who claims to be a health professional!!).

On places like Boards you will still get conflicting reports from many armchair experts. Even those with the condition experience symptoms to a greater and lesser extent depending on underlying conditions, age, gender etc so I would be careful about taking advice from these people as well.

chuci · 16-05-2006 03:42PM

i have had some contact with the disease but im not a specalist in the area by any means cistic fibrosis (cf) can be severe in most cases but it depends primarily on the individual themselves i had two patients recently who had cf one lived till the age of37 and died last week another is a 17yr old who is not very well at the moment. drugs can help ward off any chest infections but the final stage a lung transplant is the only way the cf can be "cured". cant say too much about the issue over the net but if you would like topm me then ill happy to give you a more detailed account. if not ther is a cf association in ireland if you want to contact them or pass it on to the mother so both of you can get more information.

rob1891 · 16-05-2006 04:08PM

You might have put this in P/I as some people may prefer to post anon.

My brother has cysitic fibrosis and has made it through a lot of hard times to reach his 20th year. The disease has varying levels of severity and we have heard of a few families who have lost members in childhood. My brother is quite lucky that his lungs are in very good condition though he had to have a liver transplant at the age of 12 (before this he was more or less dying from malnutrition). He now competes (he's pretty bad tho!) at amature level in a cycling and is generally very health. Long may it continue. Medication is constant and high but he's taken pills all his life now and it is managable. Many are trivial, like enzymes to digest fatty foods, others are more important, antibiotics/steroids to kill infections before they can take hold.

As has been said, it all depends on the individual. You can take for granted that however mild the case is your friend and her son have rough times ahead of them and they'll need much support from you and who ever else. Though with developments in medicines it may not be the case any longer, my parents lived with an understanding that their child would die before them. This can happen to any parent at a sudden, but to be expecting it all the time is very difficult to deal with and it has taken its toll on them.

Sleepy · 16-05-2006 04:35PM

Thanks for the responses, especially your rob1891, sorry if you would have preferred to post anon.

Lady_Macbeth · 16-05-2006 04:37PM

Hi Sleepy,

CF is a chronic genetic illness in which a mutation of a gene occurs that causes a difficulty in allowing water to pass through the membranes of cells, which means a thick sticky mucus builds up along the linings of organs. This affects the breathing and digestive systems while reproductive possibilities may be reduced and a liver disease can also develop. Please see www.cfireland.ie as suggested by another user.

I was diagnosed with CF when I was 5 years (I'm now almost 20); fortunately, I've had an excellent quality of life and CF barely inflicts on my daily routine bar the meds. Yes, it's true that a PWCF (person with CF) must take a fair amount of medication but from my experience at this stage you hardly notice taking it! I take approx. 30 - 40 tablets a day, which, with respect to CF, isn't too bad at all considering many others have to take inhalers/nebulisers/food supplements etc. Occassionally, during a period of a bad infection intravenous antibiotics may also be required for a couple of weeks.

Honestly, it cant be generalised as to how serious CF is - it is entirely individual. Some people have a very healthy life, others are plagued by infections and hospital stays. However, your friend's son needs to keep his weight up, do his physio, and take his meds. regardless.

There are, of course, many investigations into a cure and into the liver disease that some pwcf develop. Who knows what the future might bring! I'm grateful that I'm so well, but there are times that are difficult. Your friend, as his mother, will find it hard to see her son with an infection and being ill, and she will worry, just as any mother would do. But she needs to accept it as it is, and hope for the best at all times. Positive thinking is the cure!

Any time, feel free to PM me!

Sleepy · 16-05-2006 07:51PM

Thanks Lady Macbeth, my friends son is only two months old so hopefully he's been diagnosed early enough that they can ensure he has the correct treatment from early on. She's still very worried though as I think can be expected.

Your's is exactly the sort of story I was hoping to hear so that I could reassure her that her son has a chance at having a normal life.

jammie · 16-05-2006 10:41PM

Sleepy, maybe Im posting too late Im not sure, but I have cf, i am 30 years old and have a mild form but it comes at a large price...I dont not go to pubs clubs etc for risk of infection, I am only on about 15 tablets a day plus 3 nebs and of course physio etc, I HAVE NEVER been in hospital ever, so there is a lot of hope for people with cf nowadays, it isnt always easy you are constantly aware of germs, infection etc......... look if you want pm and I'll give you m y email address and the people in question can email me

idunno78 · 10-07-2006 03:48PM

I have it! I am 21 next month!! Once you look after yourself thats the mian thing. But it hits different people in different ways. I dont really get that sick but i do ivs every 2/4 months to stay that way, i do them at home whcih is handy. I should take 3 nebs a day, only do 2... Take tabs wit my food, and then about 1-3 tabs a day every second day. Ya can pm me if ya want, i not really talk much bout it but ya can ask if ya want! but like with all the new things coomin out it could be worse!! I dont let it get me down and never get upset bout it, its the way i was born, i know nothing else and i could have something worse like cancer or some other horrible disease, that my thoughts anyhow!!

edit- sorry for posting on this so long after!!

Cystic Fibrosis

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