CF Progresion

[Faust]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Well I am thrilled to here that there are people who are dx'd in their 40s and 50s, but completely without symptoms. Jusst out of curiousity, why were these tested in the first place if they were asymptomatic? Can you point me to an article or two that would have information about this?



Sorry to be so dense, but what do "SD" and "AD: mean? Are these medical acronyms that I'm not familiar with?



-lisav</end quote></div>



Sean Davis, And "Attention Deficit". I have a very mean case of it now due to the other thread rotting whats left of my brain.

 

[anonymous]

** MESSAGE HAS BEEN DELETED **

 

[anonymous]

Yup, being old has some benefits after all.
-lisav
trying to cover up her 12-year-old button a little bit.....

 

[miesl]

I was going to let your comment about Lisa and the "AP" slide, Anon. However, when you get so spineless as to insult someone for age - you have crossed the line.

 

[anonymous]

thanks miesl.
but I believe it was a joke
-lisav

 

[anonymous]

but then maybe your post was a joke too, miesl.
this fever I have is more of a problem than age...
but at any rate, don't need defending, tho' still naive, I am studying up to become "toxic granny".
-lisaV

 

[miesl]

Fever - you should rest, have tylenol, and eat soup.

I'm more than will to defend those who are unfairly insulted. Rar at insulting!

 

[julie]

Sure LisaV,

It's mostly men and they are diagnosed because of CBAVD. Being asymptomatic in all other areas which CF might affect, save for the reproductive part.

There is actually even a gentleman on this site (not sure of his age though) who was just diagnosed because of that.

 

[LisaV]

Well, I read about that.
But I also read that they are actually considering removing people with that set of mutations from the CF dx. Unless, as we discussed on another thread, those men have 5T (or maybe 7T). That they see scooping the others up as a "bug" in their genetic testing not as a "feature" -- that it's sort of a false positive of genetic panel testing.

Anyone else?

 

[LisaV]

See articles I posted in the other thread


<a target=_blank class=ftalternatingbarlinklarge href="http://adc.bmjjournals.com/cgi/content/full/88/10/886">http://adc.bmjjournals.com/cgi/content/full/88/10/886</a> .
[
for limitations of diagnosis CF just by genetic panel.

Also, not sure at all that this negates the point I was making because having just the CBAVD diagnosis is <i>not</i> the reason that any parent is visiting this board.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>

Anyone else?</end quote></div>

Wow, that is why I didnt' bite my tongue, and made that age comment out of annoyance.

 

[anonymous]

be as annoyed with me as you want.
but that won't change facts.
does anyone know anyone 50 or over who has full CF dx (not just CBAVD) who has mild CF?

Is there anyone else, other than the CBAVDers?

Cause truly folks, with 2 nieces living with CF, that would be darn good to hear.
-lisav

 

[beyerdug]

Well folks, I am almost 41 and I would say that my cf is mild. I am getting over my first long term infection, but I haven't been treated for cf until just recently. I was diagnosed when I was 7 because I had a sister with cf.

 

[beyerdug]

I don't know what my gene mutations are because they didn't have that technology back then. I suppose my doctor now will find out but I'm sure that I don't have the CBAVD thing. I guess that is something to do with fertility. I am fertile for sure.

 

[julie]

Thanks for chiming in doug. You say you've not been treated until recently? Have you had lung issues arise lately or pancreatic/digestive or both? I am just curious for my own sake, all this stuff about mutations and progression of CF and stuff really fascinates me.

I take it since you said you are fertile for sure <img src="i/expressions/face-icon-small-smile.gif" border="0"> that you have children? How old are they?


LisaV, I know there are other members and anon. posters on this site who are in the upwards of 40/50's and have what you could consider very mild CF-whether or not they have a CBAVD factor is something I have no clue about, haven't asked. I've been trying to think of who but am not having luck at the moment. I don't think it's entirely logical to rule out the CBAVD though because between 96-99% (depends on where you get your stats) of men with CF have CBAVD, so it's logical for an inclusion, although not necessairly charoletts question.
Hopefully some more older CFers will see this and post about their severity.

 

[anonymous]

What do you consider mild cf? Moderate?

 

[littledebbie]

Okay I just don't think there is much sense in telling a parent of a young child wCF who is exhibiting symptoms of CF that some CFers live to 50 or 60 some with mild CF. Because in most cases i would believe that those Mild 50 or 60 yrs olds were not exhibiting symptoms as small children. So it's sort of comparing apples and oranges and breeding unrealistic hope isn't it?
<br><br>
Let me say straight out I have no articles etc.. this is just my personal observation and I am not currently wearing my AP hat I am just engaging in the conversation. If that's alright with everyone <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br><br>
hey, if we can't laugh about it what's the point?

 

[beyerdug]

Its true that in most cases of cf the symptoms cause the diagnosis and once you have symptoms, the disease starts its progression. The progression is determined by many factors as all can atest to. The important thing seems to be to keep your child as healthy as you can for as long as you can.

Julie, to answer your questions. I just started having lung infections 2 years ago an most recently 6 months ago I started with one that wouldn't go away. I was not seeing a cf specialist because all my life I was symptom free. I do have asthma and blamed the infection on that. It wasn't until my mom mentioned that I sounded like my sister (who died of cf at age 12) that I took my cf seriously. That was when I joined the forum almost 3 weeks ago. Thats also when I went to a pulmonologist after getting great advise here.

I know I'm fertile because when I was 23 my girlfriend got pregnanat. Unless she lied, It was mine. She ened up having an abortion against my desires but it was her choice and I'm all choice. Thats another subject though. I do have 2 wonderful stepchildren that ARE my children and they are great. My youngest has acondroplasia which is a type of dwarfism and comes with its own set of complications. I do have a good life though and this forum contributes to that.

 

[julie]

Thanks for that info doug. So, all your life you did have athsmatic type problems? Were they just very mild (like activity/sports induced)?

Children are children, regardless of the circumstances surrounding. It sounds like you are a great dad and really care about them.

Glad you got some answers for yourself here when you joined. It's got to be kind of difficult to make these adjustments later in life. I can't imagine how my husband would handle a later diagnosis. He's had the meds and such all his life, he thought it was normal for everyone to do when he was little, so sure it's tough, but he doesn't have to do too much adjusting. You are on the other spectrum of that. Glad you joined and it's nice to hear a bit more about you!

 

[beyerdug]

The asthma is more related to weather and allergies.

The diagnosis of cf was made 34 years ago so I've known about it a long time. I also had a sister that was 3 years older than me that died from the disease so I have experienced the progression from that perspective. I attended a summer camp for cf kids until I was 17 then I was a camp councelor at the same camp at 18 and 19. That is when I drifted away though. I just stopped my regular checkups with the cf doctor. Partly because I was healthy, partly because it was a children's hospital and partly because I was in denial about my disease. And now here I am. I'm trying to catch up on the latest medical end of it and trying to reconnect with the cf community.