46 year old with cystic fibrosis

[Missie25]

My sister was diagnosed with cystic fibrosis yesterday and she is 46 years old. I have researched this disease and the symptoms are for younger children. Her docter told her that her disease has been laying dormant in her body until now. I don't understand this diagnosis because CF is usually not dormant, and would you not think that she would of known this when she was a child? She took her sweat test twice because they did not believe that this was possible. Can someone explain to me how this disease could lay dormint is someones body for this long and they just find it out?
Thank you

[Sunny602]

You are right, CF just doesn't lie dormant...it is a progressive disease, although in some individuals, it progresses much slower. The thing with CF is that there are many mutations of the CFTR gene, some are labeled severe mutations and some aren't as severe. Your sister probably has a milder mutation that produced less severe symptoms. I too have CF, and was diagnosed at 33, I am now 36...in hindsight I had problems with my lungs as a child, even more so when I hit my 20's with many infections -pneumonia and bronchitis. My sinuses are also a problem and these days, my digestion is an issue. Not once did I even suspect CF, I believed as you did, that this was a childhood disease diagnosed in early childhood. That is not the case anymore as more mutations are being found, I am friends with people who weren't diagnosed until they were in there 40's or so.
I bet that if your sister looked back into her past, she would be able to point out repeat lung infections, perhaps problems with her sinuses etc. The symptoms probably weren't so severe as to send off red flags to the docs until recently as symptoms got worse...What made the docs look for CF in her case?
She should see a CF specialist at an accredited CF center (go to CFF.org to find one near you) to get the proper care. I am on enzymes with meals (I am pancreatic insufficient now, that is what made the docs look into CF in my case along with my respiratory problems), use the VEst for chest physio, take numerous nebulizers that thin my mucous as well as fight infections (I grow out pseudomonas and other bugs)
I know how overwhelmed she must be feeling, it is alot to take in and try to understand. I advise her to research the disease on reputable sites, there are alot of sites with outdated info, so be wary. Go to the CFF.org site for up to date info.
You should go to this site: cysticfibrosis.com...there is tons of info there as well as a wonderful forum full of supportive, informative people. I am honored to be part of them.
They have helped me through some rough times....IF you have any questions, email me. Sunny

[dancer47]

I am 47 with CF....mild case, terrific life......read my post titled "older people with Cf"
( just did it today) and have your sister follow my advice on the bottles of water and the
juicer.  It WORKS.  I see a doctor now every year or so....it's been 2 lately.  I have also been tested mutiple times.

Most info on CF is outdated....the symptoms I had that appeared at 45  were not listed on cff.org, so each person is different.  Your sister is lucky she was just diagnosed, and didn't have to go  through 40+ years of negativity.  Again, read my earlier post, and know that they still know very little about CF.  Myself, I'm blazing a trail.  

Email me if you have questions......I'm producing a blog called "thrive with CF"
but don't have it finished yet!