I have double Df508 mutation. I'm 22 now, with a lung function of 80-90% which is good (according to my doc, though my lungs say otherwise.) I think if I had just CF, it wouldn't effect me as much as it does. But, I also have a few other conditions, one of them an undiagnosed muscle wasting condition. I think that's the thing that causes all the problems with my chest, because I get tired so easy, can't have half of the antibiotics because they make it worse, can't do much excercise.
Do I resent my parents for giving me CF-nope not at all. I only resent how I was brought up, and hate my mum for that-not because she gave me CF.
There is a lot of dispute it seems about
whats the worst mutation of the cf gene to have. I'd say that noone is sure, so they keep saying different things until they find out what is right. I have friends who have had a hard life and been double DF508 sufferers, and died at aged 14 and 20. Another friend, has Double DF508, the same chest infections as me for only 2 years longer, yet he was similar health wise to be, until tis last year, when there has been a big plummet in his health-for no real reason-no extra infections, just the same as me. He's really poorley. But then my little brother-he has to have treatment every 1-2 years, can still play sports, work full-time and have a social life. He's double df508 too.
It's like with the life expectancy, that changes so often it's unreal. AS treatments get better, and more research is done, the average life expectancy of someone with CF extends.
Considering that 1 in 25 of the population is a carrier of CF, it's odd how many people actually have never heard of CF, and know noone in there family with it. Me and my brother are the first known in our family. I thinks it's to do with CF being relitively new, it was only even given a name in the 1900's. If you read the thread 'CF timeline' you will see what I mean.
Even though the gene is now known about
, and where it is located on choromosome 7, they can still only test for a handful of the hundreds of different mutations of the gene.
I'm glad you came to ask for info. You have to be 100% certain that whatever you choose to do is right for you. Noone can tell you what you should or shouldn't do. Even if you had IVF and could get rid of the CF gene, who's to say that there isn't another genetic fault that can't yet be tested for. You can never be 100% with genetics, they are crazy things, they can be changed and effected by other genetics in the body, parts of faults can even be cancelled out, if there is something else that gets in the way, enviroment can change how genes react, anything really.
Just be certain before embarking on this adventure, that you know what you want and what to expect.
Good luck, and message back if you want help on anything.
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