Help with CF awareness

[lflatford]

Hi everyone!

I am beginning a campaign at the High School where I teach to raise CF awareness. My school has shown interest in raising money for CF research. I want to get a list of symptoms and medical conditions that are related to CF in order to use during my campaign to help them understand what a CFer can or might go through. The thing is that it is hard to find an accurate list of these from books or websites. So I figured who better to ask than people w/CF and their caregivers.

If you all could list all symptoms and medical conditions you have or know that CFers can have I would appreciate it. Please don't abbreviate, because I still to new at this to know what you are talking about.

Thank you so much!

 

[julie]

Here are a few off the top of my head
-pancreatitis
-lung infections (maybe list a few of the various bugs, which I am sure people from this site can share, and then relate the bugs to problems i.e. psedudomonas infection compared to MRSA compared to Burkeholdia Cecapia (sp??))
-digestive complications (some CFers are actually categoreized as having having malnutrition problems)
-weight loss
-diabetes
-infertility (most common in men, sometimes occurs in women)

There's a few.

 

[anonymous]

I think that is a great idea. I was thinking of doing something similar at some point. I'll just rattle off a little of what my daughter has gone through. Meconium ileus at birth requiring surgery to release her bowel obstruction. Pancreatic insufficiency requiring enzyme replacement with almost all meal and snacks. She needs a high-cal high fat diet because of her malabsorption. Chronic bacterial lung infections requiring IV antibiotics, oral antibiotics, inhaled nebs, vest therapy(to loosen up mucuos)Hmm let me think; special vitamins because fat-soluble vitamins are malabsorped in CF'ers. Lots of exersize to keep their hearts,lungs body healthy. Good hygiene practices to prevent getting sick, like Purell the hands, good handwashing, flu shots, avoiding overly sick people coughing in stores. I'm sure others can think of more.

rebecca(mom to Sammy7 no CF and Maggie alomst 3 with CF)

Oh yeah I forgot routine CF clinic visits every 3 months even when healthy with sputum cultures

 

[rose4cale]

My son also has an enlarged liver and his liver levels are elevated. Can't give you much of an explanation on the how's and why's of that though. He does take meds for that. Reflux is a common problem.

Daily precautions that have to be made would be a good subject as well as the cost of this illness. Clinical visits, meds, vest and so on.

 

[anonymous]

salt crystals on body after working out or on a hot day.
Bloating/cramping of stomach - sometimes extended
thin
pale
large appetite (always snacking) because of malabsorbtion
no appetite (because of antibotics)
frequent and/or productive, thick cough
taking enyzmes with food
sometimes jittery after doing albut. neb.
doing nebs and vest 2x day
risk of developing diabetes, osteo and arthritis
using oxygen (I used to have to wear it at night)

I think it's great your doing this. I wish teachers would have been more aware of my condition when I was in school. Sometimes its hard enough dealing with other students making fun of you, without feeling bad about teachers staring at you in the lunch room because of all the food on your tray (cause then they think your not getting food at home), or the gym teacher wanting me sit out because of my condition (which I wouldn't).

<i>(I do have to state on a side note, that I don't agree that it is ok to make a cfer "come out" and/or coherce them to educate their classmates. Some kids grow up in a great, supportive community, but not all do, and I think that should be left up to that person. I remember reading a while back on a post that some parents and teachers made them give reports to their class and in one case the whole school -- all I could hear in my head was HIPPA! Kids are entitled to their privacy as well). </i>This is a side note only, I know Lynsey is not implying this.

--Wallflower

 

[anonymous]

Clubbed Fingers
Additional Dr. Visits
Don't "Grow out of it" - I have been asked this alot about my child
Hospital Stays
25 - 50 pills a day
1hr. 30 minutes of Vest Treatment + nebulizer (tobi, abuterol & saline, Pulmozyme)