Hi there Rose, welcome too Healingwell!
I'm Gemma 22, with CF myself. Diagnosed at age 2.
I also have double DF508 mutation and know of a few others. Generally I'm doing well, but my brother is doing better. My friend is still in full time work and doing really well aged 21. My other friend sadley passed away last year aged 20.
Unfortunately, genetics can't tell us anything. They can't give a life expectancy, and things are so different for each person.
My brother and my friend are on different amounts of enzymes too me. My brother has a different strain of an infection called Psudomonas to me and my friend. I've also heard of someone living until the age of 60 with double df508.
The average expectancy now for someone with CF is 40, a couple of years ago it was 31, before that 21, 12 and 5. These life expectancies are the ones we've been given as we've grown up. With advances in treatment and the possibility of a cure and longer lasting transplants, noone can give an estimate anymore on how long any person with CF will last, or with the new generation of children, how long they will stay well for.
I believe you have done the best possible thing by taking your granddaughter too a CFF accredited center. In the UK we have CFT accredited centers and the difference in care between a normal hospital and a CF center is incredible.
Because your grandaughter has been diagnosed so early, she will have the best possible chance. I once read somewhere that diagnosis before the age of 6 months results in milder respiratory symptoms and less nutritional problems.
If you have any questions, just ask
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus