"Cures" that didn't happen

[froggymama]

Hi all,
I'm writing an essay about being a parent of a kiddo with CF and was wondering if anyone in the CF community remembers what "wonderdrugs" have been introduced as a possible cure, only to be a big disappointment? I remember reading an article when my daughter was first diagnosed that Tumeric was a possible herbal cure. Can you think of any others? Thanks so much in advance! -Elise

 

[froggymama]

Hi all,
I'm writing an essay about being a parent of a kiddo with CF and was wondering if anyone in the CF community remembers what "wonderdrugs" have been introduced as a possible cure, only to be a big disappointment? I remember reading an article when my daughter was first diagnosed that Tumeric was a possible herbal cure. Can you think of any others? Thanks so much in advance! -Elise

 

[hmw]

Denufosol. It was well along in the trial process (phase III) at the time it was scrapped. It was intended to work by activating an alternative chloride channel to help make up for the nonfunctional cftr. It was not mutation specific like the vertex drugs and ataluren- you can find more info about it googling it. It wasn't hailed to be a 'cure' but if successful would have been a very important, breakthrough treatment.

Attempted gene therapies tried since the cftr gene was isolated have not worked out thus far. Again, this can be googled for more info.

 

[hmw]

Denufosol. It was well along in the trial process (phase III) at the time it was scrapped. It was intended to work by activating an alternative chloride channel to help make up for the nonfunctional cftr. It was not mutation specific like the vertex drugs and ataluren- you can find more info about it googling it. It wasn't hailed to be a 'cure' but if successful would have been a very important, breakthrough treatment.

Attempted gene therapies tried since the cftr gene was isolated have not worked out thus far. Again, this can be googled for more info.

 

[Ratatosk]

I recall Red Algae or Red Tide being mentioned about 7-8 years ago.
The most disappointing was an infectious disease doctor who told my MIL that she thought because of identfication of the gene and gene therapy, there'd be a cure within 5 years. That was 9 years ago. Realistically, we knew that was improbable...

 

[Ratatosk]

I recall Red Algae or Red Tide being mentioned about 7-8 years ago.
The most disappointing was an infectious disease doctor who told my MIL that she thought because of identfication of the gene and gene therapy, there'd be a cure within 5 years. That was 9 years ago. Realistically, we knew that was improbable...