Cystic fibrosis and cepacia.....

[Sunny602]

Hello all....I know I posted awhile back about B. cepacia treatment, I figure I would give a clearer picture as a lot has happened since then. I did have a sweat test, which was 48, equivical range. This will be repeated soon as well as a more extensive genetic testing of the disease. The docs at this point highly suspect CF at this point because of the cepacia as well. It was also discovered tht I have pancreatic insufficiency and now take enzymes which has helped, been losing alot of weight quickly. I am 33 years old and live on a vent, have neuro issues as well. Now, here is my question...how rare is this to be diagnosed at this age? I had asthma for years, docs think it was the CF and not asthma. I know most diagnosis are made when they are kids or infants. The docs believe I have a pretty rare mutation of the disease. Thank you for listening. Hugs Sunny

[National Jewish]

It is no longer rare to be diagnosed with cystic fibrosis (CF) at age 33.  The symptoms of CF are not always severe enough or "classic" enough to suggest the diagnosis.

You should do better, now that the pancreatic insufficiency is being treated.