@mayflowers
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Stacy French replied to the topic Late CF Diagnosis in the forum Adults With Cystic Fibrosis 6 months ago
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]
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Stacy French replied to the topic Aging and CF in the forum Adults With Cystic Fibrosis 6 months ago
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]
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Stacy French replied to the topic Aging and CF in the forum Adults With Cystic Fibrosis 6 months ago
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]
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Stacy French replied to the topic CF and loss of smell in the forum Adults With Cystic Fibrosis 1 year, 8 months ago
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.
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Stacy French replied to the topic Telemedicine One 'Good' Thing to Come Out of COVID Crisis, Doctors Say in the forum Coronavirus (COVID-19) and CF 2 years, 10 months ago
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]
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Luisa Palazola and
Stacy French are now friends 4 years, 1 month ago
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Stacy French posted a new activity comment 4 years, 2 months ago
at this time, I have to say, many people cannot smell the mold .. it affects me on my face like a film and causes sinus pain. I did call people who could do something and requested they do an air quality test. Needless to say, no one has ever called me back or contacted me as they said they would within 2 weeks. One person said to me, “you’re…[Read more]
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Stacy French posted an update 4 years, 2 months ago
I am living in the south… the hospital connected to my cystic fibrosis clinic has an air quality issue of being moldy. I have been under the impression that it is dangerous for a CF patient to be subjected to a moldy environment. I have CF and have had aspergilosis in my lung and have had aspergillus mold in my sinuses. Does anyone have…[Read more]
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Hi Stacy,
From what I understand, I think mold can potentially be a dangerous problem. Let me do some research and I will get back to you! How has your clinic approached this?-
at this time, I have to say, many people cannot smell the mold .. it affects me on my face like a film and causes sinus pain. I did call people who could do something and requested they do an air quality test. Needless to say, no one has ever called me back or contacted me as they said they would within 2 weeks. One person said to me, “you’re…[Read more]
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Stacy French became a registered member 4 years, 2 months ago
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Stacy – My name is Michael Morale, and I’m the Forums and Multimedia Director for Cystic Fibrosis News Today. I want to thank you for taking the time out of your day and becoming a member of our Cystic Fibrosis forum. Our job is to make sure that we provide you with the information that you’re looking for, and to try to assist you in any way possi…[Read more]
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Hi Stacy! My name is Tré LaRosa and I’m one of the Forum Moderators. Thanks for becoming a member! I’m excited about what this forum could become as a place for quality discussion and a welcoming place for the community. Looking forward to your contributions!
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