Hello,I was just wondering how many of you actually KNOW what CF is... I am just now learning what it is and how it works.. i am 19 and was diagnosed at 2... To sum up what i am saying i basically knew some stuff about it, i knew what i did about it, but i didn't know what it was. I am slowly putting info together to create what i think it is. I know quite a bit but was sorta clueless and blonde about it. When i talked to my mom about this she said "Oh i guess we just thought you always knew"... the reason i am posting this though is not for info it is just to tell parents to tell thier kids what CF is and how it effects your body... i grew up thinking CF was "a genetic disease that makes lots of mucus that creates infections" i now know that there are little cysts all through our lungs and everything else and a whole lot of other crap... My docs were shocked too to know that i had never been told this stuff, not even by the Children's Hospital Clinic. So my education about myself is growing rapidly... 17 years of dealing with this and i am just now learning how it works. CRAZY!Julie<img src="i/expressions/sun.gif" border="0">
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
how much do you know
- Thread starter anonymous
- Start date
hey julie,its only really when you begin to research it yourself that you find out everything "CF has to offer" so to speak!!!when i came away to uni, i had constant interenet access so started researching it myself. and im glad i learned as much as i did coz it meant when things started going rapidly downhill last year i was able to understand what was happening. i dont think that doctors explain it enough, and i believe good control and treatment starts with good understanding, which is why so many teens with CF have problems with compliance. i wasnt compliant when i was younger, i didnt have a clue what the consequences would be! but i guess it is also important that you only learn these things when you are able to grasp them mentally. anyway will stop blabbering on, feel free to email me at tinypoppet@hotmail.com coz i am 19 and have CF too! hehe.
I think the main thing is to ask, ask, ask. When you see the doc dont let him/her give you vague answers...tell them you want to know all the specifics. My doctor is very good about telling me anything I want to know.....and explains it to me if I dont understand. I also receive CF newsletters which are good for new info on research...and just personal stories from other CFers. I also as a kid didnt know a whole lot about CF...except that it affected my lungs and digestive system....which we all know is such a vague description. As I started getting older....I started doing lots of research...and we cant ever know everything there is to know about it..... but we can do our best!Take care!Dea30yr old w/CF