Stacy French

until DNA was found … late diagnosis was not possible.. which is why so many of we the late diagnosis due to rare CF genes were not diagnosed.  It is because I suddenly had aspergillosis grow in me.. then bronchiectasis was diagnosed, ignoring all the childhood and adult issues with sinus and lungs… it was the continual lung issues that I…[Read more]

Here in the states, it was just approved for me who has a rare gene.. I too was diagnosed late in life.  I just began taking trikafta.  So far my breathing is a bit better, but I still suffer as if I just ran a marathon at times.  I have pseudomonas in my chest and sinus, pancreatitis,  bronchiectasis, aspergillus, and now osteoporosis.. what mor…[Read more]

Sadly for some of us who were diagnosed very late in life.  There remains no useful information for us.  We are not asked to be in studies and we have no place in this other than to aid in drug development by taking cf drugs.  It is sad that this foundation has done nothing to insure the abatement of mold in a local hospital which claims to ha…[Read more]

No ability to smell since 4 yrs ago.   I have my husband season salt and pepper being careful on salt as I have basic taste.. sweet salt hot sour bitter.    It’s cooking by memory for me.  I must always tell restaurants to use minimal salt on steaks or that becomes an overwhelming distasteful event for me.

I do not believe this is a good way to examine a patient. How any times has an in person visit found an issue that was not why the patient contacted the doctor? These things would never be found via the internet. Not everyone has blood pressure equipment nor a stethoscope. One can not have blood work done. So the question then becomes who are…[Read more]