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Aimee Ford-Young
05-08-2015, 02:45 PM
Afternoon all,

had a bit of a bombshell today, after a persistant cough for 18 months which is productive I've been sent for CFTR test. Is this normal in a 27yo female? Chronic autoimmune issues for 25 years plus so not new to Drs.

Can an anyone offer words of wisdom or similar?!

Aboveallislove
05-08-2015, 03:52 PM
Hey Aimee,

A few thoughts. First, I'm sure this is quiet a shock thinking it could be CF. I'm assuming when you say "CFTR test," you mean a sweat test? Please make sure they do this only at an accredited CF location. (CFF.org lists the accredited locations.) A sweat test anywhere else doesn't mean much.
It may well be that they are just testing to "rule it out," but that is actually good because there are many here diagnosised later in life where doctors didn't even think to test and folks go years untreated. So relatedly, yes, it is rarer for a later in life diagnosis, but it is something that happens and as I said many here have had it. And it is actually becoming more common now that doctors are learning more about the CF mutations. I'm not sure what the autoimmune issues are, but if it is elevated white blood counts it could be possible that it is a reaction to bacteria you are harboring from CF, if that is the case. Now, if it turns out to be CF, a couple things: 1) What you have likely read of CF is probably not to accurate. Things have progressed and changed much. 2) If it is positive for CF, remember you've always had it and while it will be a hard diagnosis to hear, it means you will now get proper treatment and do much better; 3) a late diagnosis usually means you have less severe mutations and there is a medicine that helps partially fix many of these mutations and those on that drug do really well. So it is important that if you have a positive or a borderline test to have a full gene sequencing to determine what CF mutations you have. Also, you might want to have some salt water before the test as that helps with the gathering of the sweat for the test. Good luck! PS This probably sounds like a bunch of goggled-gook, so please ask away for clarification on any jargon!

Aimee Ford-Young
05-09-2015, 01:40 AM
I'm in the uk so do we still have CF locations? And it's actually a blood test they have requested with samples of sputum is that looking for CF too?

I realised after posting this is probably the wrong place to post thread wise sorry!

Regards to autoimmune im diabetic, coeliac (celiac) and hypo thyroid too. Not blood count related so are there links

Thanks for your reply :)

Printer
05-09-2015, 11:09 AM
Aimee:

I was diagnosed at age 47 and there is a woman out here who was diagnosed at age 76, so 27 is nor out of the norm. I don't know much about the medical system in the UK but it is critical that you see a Cystic Fibrosis specialist for your CF health management.

There must be a CF fund raising group in the UK, contact them for clinic information.

Bill