Late/Adult Diagnosis does NOT = Adult Onset

[abloedel]

All of you late/adult diagnosed CF'ers out there....

Just had yet another "fun filled" experience attempting to educate a doctor that I do NOT have "adult onset CF" - only that I was DIAGNOSED as an adult!! OMG! Are they all this stupid? I mean I don't have a medical degree or anything, but since this is a genetic disease, shouldn't they realize that I was BORN with this, just like all the other CF'ers....just no one ever connected all of the dots until recently.

For the 3rd time in as many weeks, I've had to explain this to specialists I'm seeing for CF related issues, but not for the CF itself. If I have to hear ONE more time "When did you "get" CF?" from a doctor, I think I'm going to scream. I can understand this question from someone with a non-medical background, but geez!

Any one else have this happen to them? Is there a website or a handout or something to give to the doc?

Had to vent...thanks as always for "listening"!!! I feel better now!!

Amy
36 w/CF

 

[anonymous]

i can understand your frustration! I dont know of any pamphlets or any thing to help you but i just wanted to tell you your not alone I too get terribly frustrated with some doctors on their ignorance of cf i! I dont have a medical degree either but in the 7 years ive been dealing with cf ive come across many ignorant doctors. Why should we be the ones to have to educate them? We've had many upsetting visits to emergency rooms at a childrens hospital!!! I'll tell you 1 thing though once a shy and timid person i have certainly learned how to speak up for my child!

 

[thefrogprincess]

I wasn't diagnosed late so i can't relate to you there but don't be too hard on these other specialists, especially if they don't see a lot of CF patients. Many genetic diseases do not show any symptoms what so ever until later in life. A few examples are Lou Gerihgs (or ALS), Huntingtons, and Alzheimers. They can test for many of these diseases before symptoms ever show up, so even though a person could have the genetic code for it, it just hasn't presented itself yet. Someone who doesn't deal with genetics may not know that you have CF all your life because you may not have ALS until your 50 despite the fact that you've always had the gene.

 

[anonymous]

I did not realize that about the other genetic diseases (as far as presentment of symptoms being so late in life)...that is why I love this site...can vent AND learn! Thanks!

Amy

 

[anonymous]

I am rolling on the floor laughing my a#& off! I'll definitely have to remember (and use) that one!

Amy

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>abloedel</b></i><br> If I have to hear ONE more time "When did you "get" CF?" from a doctor, I think I'm going to scream. I can understand this question from someone with a non-medical background, but geez!



Any one else have this happen to them? Is there a website or a handout or something to give to the doc?



Had to vent...thanks as always for "listening"!!! I feel better now!!



Amy

36 w/CF<hr></blockquote>



Answer like I do. I got CF when my mom and dad had sex. Not the nicest thing to say but it gets the point across. I was diagnosed at 3 mo. and I still get the question.

Eric 24/cf

 

[anonymous]

Just read Quoof's reply. Awesome, got to remember that.

 

[anonymous]

Hello,

A first year medical student here... just want to say I am sorry to hear about your experiences.

Our current PBL case (problem-based learning) has a person who I *THINK* may have a late onset of CF. If it matters, here's one (hopefully) to eventually be intern that will know about CF.

 

[debs2girls]

Amy, I had someone ask me that about my daughter. It was a "nurse" at the c/f clinic...she was taking vitals and all that, then she says..."when did she get c/f?" I said "My guess would be inutero, but she wasnt diagnosed until last November.

Amy, if you dont mind my asking....when were you diagnosed? What caused you to be tested?

 

[julie]

Amy, Here's Marks helpful advice <img src="i/expressions/face-icon-small-smile.gif" border="0">

My mother and father weren't really thinking about it, had unprotected sex one night, nine months later out I came.... that's how I "GOT" CF. Or someting like that.

Marks family practice doctor on the base does this all the time. I want to club him in the head, but I have to work with the guy so both of us refrain from sarcasms with the guy.... but rght before I leave the military, Mark has permission to be his sweet ol sarcastic self <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Yes Amy I am sorry to say most
Doctors are kinda DULL when it comes to Cf.<img src="i/expressions/face-icon-small-sad.gif" border="0">

I have never really been thin except when I
was very young, I have been what Docs term as
thick ? So over the Years when I would see
a new Doc ( Young ) they always thougt the
Cf Dx was wrong, ( don't I wish ) so I would have
yet another sweat test ,,,,,,

Still to this day if I meet a new Doc and tell them I have Cf , they
always say no way.

If You have now, You always Had it .... just had a case of Slow Docs.<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[anonymous]

Sorry, Last post was Me..


Brad. 49 w cf

 

[thefrogprincess]

Many genetic disease CAN have an adult onset (ALS for one or Huntington's). And lets face it, CF is rather on the rare side. How many people have you encountered who have no clue what it is? My general practitioner doesn't even know much about it. So although these people do have a medical background, unless they work specifically with CF its really not so unusual that they won't know much about it.

 

[Debi]

I don't really get mad at docs and nurses or RPTs who say these kinds of things, but I sure find it puzzling. I understand that doctors cannot know about every genetic disease in the world, but cystic fibrosis is the classic disease used in every science textbook starting in junior high to explain genetics. It's the disease used when junior and senior high school and even undergraduate college students take introduction to biology - it's used to do Punnett squares, where you show each parent with either a dominant or recessive gene, and how to calculate the odds of their children having cf or being a carrier. My kids (one a junior in high school, the other a junior in college) have been through this exercise no less than 7 times between them already.

My other favorite comment is when a medical provider says "you can't have cf, you're too old." How I wish I could just say, okay then, I don't have it. And it would magically be gone forever!

Maybe we should make up business cards with some brief facts about cf that we could hand out to the non-beleivers. Allie - maybe you could come up with a cool design and clever saying to help us out. In the meantime, I guess we just need to have a lot of patience and a good sense of humor. I will definitely remember the sexually transmitted disease rejoinder!

 

[dyza]

Jessi, CF is the most commonest Autosomnal disease in the UK, and i,m pretty sure the US as well. So doctors and students should be taught this as Debi says.