Senior cf diagnosis

SuzanneNez

New member
I was diagnosed several months ago with Adult Onset CF, with a DeltaF508 gene. Only one gene, but it has apparently mutated and turned into full-blown CF. I am a very young and active 74 years old, and am currently waiting for an appt. with an Adult CF center in L.A. county. Has anyone ever heard of such a late-in-life diagnosis?
 

Printer

Active member
I am also 74 years of age and I was dx at age 47. It is extremely important that you not only be seen at a Adult CF Center but you MUST be seen by a CF Specialist.

I expect that your health will improve with CF treatment.

Bill
 

Imogene

Administrator
WOW Welcome Suzanne! Chris Baldwin just posted in his blog about someone diagnosed at 76 in Ireland.
How smart you are to come here. Bill gave you great advice. And you can search our forums and find info you won't find anywhere else!

With all the new mutations discovered you probably are just the beginning of a long line who will be newly diagnosed!
Thanks for signing in...I know members here will always help.
Salt and light,
Jeanne
 

SuzanneNez

New member
Thanks for the response, Bill. I've got an appt. with the adult CF center; just got it yesterday, and am very excited. Do you have gastro issues as well, or is it mostly confined to your lungs?
 

SuzanneNez

New member
Thanks for the welcome, Imogene. I'm so intrigued about someone being diagnosed at age 76; would you mind giving me the site for Chris Baldwin's blog so I can read more? Thank you for providing this amazing forum. Suzanne
 

Printer

Active member
I had a downturn in lung function over the past two years, however my FEV1 is still about 60%. I have had very serious digestive issues starting at age 20 and continuing still.

Bill
 

oldcflady

New member
I am also one diagnosed late in life. In January of this year, at age 76 I was diagnosed with CF. All my life I had coughing and bringing up thick mucous. I also always have had digestive issued. My son had Cf, diagnosed at age 5. He died from CF at age 28. Although I always had these symptoms, no doctor ever suggested that I be tested. It was unheard of back in 1967 for an adult to have CF. finally this past year my symptoms were becoming more severe, I asked to be tested. I have the F508 gene and 2 other unknown mutuations. I am now going regularly to the local CF clinicmwhere they now have an Adult CF doctor who only sees adult patients.I nebulizing pulmozyme once a day. I am doing much better now. I turned 77 in July. I was able to live a normal life all these years, had 3 children (one with CF, 2 are carriers), have 6 healthly grandchildren, a long career as a CPA owning my own business, and taught at a University for 12 years. Now I am retired and still very active. I wish my son could have had the benefit of all the new treatments and knowledge about CF. The CF gene was just discovered in 1989, and he died in 1991. I am so grateful for this forum. I have discovered many others out there that were not diagnosed unitil later life. I hope that by studying us old folks the CF doctors will be able to find helpful information towards a permanent cure. My son's doctor many years ago believed that the final cure would come by being able to correct the defective gene before birth. I have found it amazing that there are so many mutuations of this gene. keep living your life as you were, and CF just adds a few more things to your daily routine.
 
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