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Topic: Mild CF?
Replies: 19   Pages: 2   Last Post: 07-Dec-2006 13:29 by: Phillippa

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Replies: 19   Pages: 2   [ Previous | 1 2 ]
dyza

Posts: 24
From: Port glasgow
Registered: 08-Nov-2006
Re: Mild CF?
Posted: 06-Dec-2006 12:02
  Reply

http://www.cysticfibrosismedicine.com/CFdocs/CFText/gene.htm
Heres this for a start, im sure i can find a table with different genes and their classes

dyza

Posts: 24
From: Port glasgow
Registered: 08-Nov-2006
Re: Mild CF?
Posted: 06-Dec-2006 12:14
  Reply

http://www.cdc.gov/genomics/gtesting/ACCE/FBR/CF/CFCliVal_24.htm

scroll down half way, there is a table with the most common genes and their classes. I can remember coming across a more advanced table, but cant locate it just now.
Another thing you have to consider, is modifier genes, these are the genes that will determine how your cf affects you, i:e its not just the gene mutations.

Hope this helps

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006
Re: Mild CF?
Posted: 06-Dec-2006 23:15
  Reply

My children both have DF508 and R117H.

Seren is your typical mild CFer, Dylan is the opposite. He's had 13 courses of iv's and takes 3 inhalers, 3 doses of nebulisers per day (TOBI or Colomycin, and DNAse), vitamins, 3 oral antibiotics at the moment (usually two, Azithromycin and Fluclox), Creon (quite a high dose for his age), and Omeprazole for gastro-oesophageal reflux.

Becky x

*Laura*

Posts: 97
From: Warrington, Cheshire
Registered: 15-Mar-2004
Re: Mild CF?
Posted: 06-Dec-2006 23:35
  Reply

I was diagnosed due to failure to thrive. I had no chest symptoms as a young child at all. I took creon, had physio, fluclox, vitamins etc but I was a healthy child in every other respect. I've always been a bit skinny but I was very active (I did ballet, tap, modern dancing, gymnastics, swimming etc) and no-one would ever have guessed there was anything wrong with me. I never had days off school (except for clinic appt. every 8 weeks) until I developed ABPA at age 9. Even then, I recovered within a matter of a week or so (on steroids) and wasn't admitted to hospital for IVs until I was 12. It's kinda been a bit downhill from there though! Ah well!

Every CF case is unique - that's what makes treatments and predicting the future so difficult. You just don't know what's going to happen and at what rate. There are people who aren't affected by CF very much at all - this may stay the same for many years, it may not. Try not to think about it too much - as it's easy to assume the worst which isn't always the case.

Laura xxx


Message was edited by: *Laura*
Just read the posts about mutations and classes and thought I'd add mine. deltaF508 (class 2) and 1898-1G>A (class 1)


Phillippa

Posts: 42
From: Durham
Registered: 06-Nov-2006
Re: Mild CF?
Posted: 07-Dec-2006 13:29
  Reply

Really interesting.
Both of our daughters have DF508 x 2, and are 'mild' cf'ers (touches wood).
If Neve hadn't got Gastroenteritis goodness knows how long we would have went wihtout the diagnosis, as it was Neve was 3 1/2yrs and Drew was 1 1/2 yrs with no symptoms at all!


Message was edited by: Phillippa