On one of the earlier posts there was a discussion about whether people who lived the longest with CF were the people who were diagnosed at older ages. I was just wondering if those of you who are adults with CF were diagnosed later in life or didn't present the symptoms until later in life. So if you could reply with your age of diagnoses/or age began presenting symptoms and your age now I would appreciate it. I hope this isn't rude to ask, I am just trying to figure some things out and I thought others might want to know as well.
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Age of Diagnoses and Age now
- Thread starter lflatford
- Start date
HollyCatheryn
New member
I was diagnosed at 7 months old. Before that everyone told my parents I had "failure to thrive" which usually indicates neglect and crushed my parents. My parents knew that of all the things that could be wrong with me neglect wasn't one of them. I was in terrible shape when I was diagnosed and the docs told my parents that they'd do their best, but not to hope for much more than me to live to be about 2 years old. Now I have a daughter who is 3.5!
I was diagnosed at 2 years, and am now 33 (creeping ever so much closer to 34). My condition has mostly been on the mild side (with treatment) - I was a very sick baby, and it took a couple of years after diagnosis to get to the point where I was doing well and out of the hospital.
--Wallflower
--Wallflower
Emeraldmirror
New member
I was diagnosed at 15 months, now i'm 21
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Ashley 21w/cf
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Ashley 21w/cf
wanderlost
New member
I was diagnosed at 6 weeks with failure to thrive - I was literally starving and actually had to have a blood transfusion. That is the only time I have been in the hospital with CF. I am now 28 and the mother of one, working on another!
princessjdc
New member
I was diagnosed at between 9 to 11 months, cant remember, I too was a very sick baby, and I was once told that they had called a cold-blue on me! Anyhow, they keep telling my parents the statistics when I would die, like went probably 2 then they said it would be 8 and then so on and so forth, well, guess what Im still a tickin, and Im now 25 years old with mild cf.
6
65rosessamurai
Guest
I was diagnosed at age 7, and am now 40 years old. I had symptoms, that my mother and grandmother (An RN at the time) couldn't figure out until I was age 7, after a doctor and nurse did a follow-up to a birth complication my little sister had at the time.
BaylorCrew07
New member
I've had symptoms my whole life, although they were not extremely severe. I was diagnosed at age 20, and I'll be 21 in 8 days. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Debra
Debra
I was diagnosed at age 2 and am now 22. Was a chubby baby and was always in the 90th percentile of weight/height, but I started coughing and presented basically with a pneuomonia that developed from a cold (which a terrible doctor kept saying "was just nothing" until my mother went elsewhere).
I was pretty healthy all through school/high school, but upon getting b. cepacia 6 years ago I am not as healthy as I was, but mostly the last 3 or so years have been hard. The cepacia didnt "kick in" and make me sick right away.
Caitlin
I was pretty healthy all through school/high school, but upon getting b. cepacia 6 years ago I am not as healthy as I was, but mostly the last 3 or so years have been hard. The cepacia didnt "kick in" and make me sick right away.
Caitlin
Hi all...I was just diagnosed at age 33, but I by no means a "typical" CF'er....my weight was in the right percentages as a kid, I did tend to hold on colds longer though and hated track because I couldn't keep up with the other kids, I just brushed that off as not being meant for running although I loved swimming! As I got older, I developed asthma and got pneumonia frequently, all blamed on my asthma. I have alot of medical issues though, I think that is what made my diagnosis a late one. I have auto immune issues, neuro issues (live on a vent) and of course the respiratory isssues and just recently, pancreatic problems. I will be 34 soon...so far I am on IV's almost every other month...I am on them now because of a flare up of a really bad sinusitis and my cepacia. My primary doc is the one who pushed for the testing..the other docs pretty much said that with all of my other problems, having CF would be a pretty rare coincidence and unlikely. I know it sounds crazy but boy were they surprised! All in all, I think I was a mild case until I was vented, then all hell broke loose. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was diagnosed at 3 months old because my mother had a hunch that something just wasn't right with me. My pedatrician told my mother that I absolutely did not have CF. Boy was he wrong. Needless to say we left him. I am now 22 years old and still going.
Margaret
Double lung tx 11.11.04
Margaret
Double lung tx 11.11.04
Hi,
I was diagnosed as a baby of 6 months, did not do a regular therapy until I was 12 years old. At that age I started a permanent oral antibiotic therapy. In my twenties I had the first iv, since then once a year for 3 weeks, sometimes only every 2 years. I did not inhale anything, only once or twice for a short period. At about 33 I started doing regular "dry" inhalations like pulmicort or similar things and pulmozyme sometimes, but not really regularly. Since about 2 years I take insulin and do inhale colistin for 2 weeks sometimes. Oh, but I did always take enzyms...
Well, I´m 43 now and still doing okay.
Uli,Germany
I was diagnosed as a baby of 6 months, did not do a regular therapy until I was 12 years old. At that age I started a permanent oral antibiotic therapy. In my twenties I had the first iv, since then once a year for 3 weeks, sometimes only every 2 years. I did not inhale anything, only once or twice for a short period. At about 33 I started doing regular "dry" inhalations like pulmicort or similar things and pulmozyme sometimes, but not really regularly. Since about 2 years I take insulin and do inhale colistin for 2 weeks sometimes. Oh, but I did always take enzyms...
Well, I´m 43 now and still doing okay.
Uli,Germany
yeah, also when I was two and was brought into Children's for the sweat test, they couldnt give the results so they sent my parents home saying "go home, we reallllly dont think she has it"
they called a few hours later apologizing all over the place, and telling my parents they had to come in immediately to learn everything/etc...
caitlin
they called a few hours later apologizing all over the place, and telling my parents they had to come in immediately to learn everything/etc...
caitlin
Thank you to everyone who posted answers to my questions! I guess I am trying to figure out a disease that isn't easy to figure out. I hope some day I will quit trying to figure out what the future holds for my daughter and live day to day. All of you are so strong and I hope Avery is just as strong when she grows up.