Inaccurate Facebook Postings

[Ratatosk]

I should never have decided to "like" the Cystic Fibrosis Foundation's page on Facebook and should just not even go there.

I get increasingly frustrated with individuals posting that their child just have CF of the pancreas and that their child'd lungs will never be affected. It's what their doctor told them, so therefore they need not worry about anything else. "Do you have CF of the pancreas or CF of the lungs" Ugh!<img src="i/expressions/face-icon-small-happy.gif" border="0">isgust;

There are similar posts and these are from people offering advice to others and who supposedly go to accreddited CF clinics. It's just hearwrenching at times.

 

[Ratatosk]

I should never have decided to "like" the Cystic Fibrosis Foundation's page on Facebook and should just not even go there.

I get increasingly frustrated with individuals posting that their child just have CF of the pancreas and that their child'd lungs will never be affected. It's what their doctor told them, so therefore they need not worry about anything else. "Do you have CF of the pancreas or CF of the lungs" Ugh!<img src="i/expressions/face-icon-small-happy.gif" border="0">isgust;

There are similar posts and these are from people offering advice to others and who supposedly go to accreddited CF clinics. It's just hearwrenching at times.

 

[Ratatosk]

I should never have decided to "like" the Cystic Fibrosis Foundation's page on Facebook and should just not even go there.
<br />
<br />I get increasingly frustrated with individuals posting that their child just have CF of the pancreas and that their child'd lungs will never be affected. It's what their doctor told them, so therefore they need not worry about anything else. "Do you have CF of the pancreas or CF of the lungs" Ugh!<img src="i/expressions/face-icon-small-happy.gif" border="0">isgust;
<br />
<br />There are similar posts and these are from people offering advice to others and who supposedly go to accreddited CF clinics. It's just hearwrenching at times.

 

[angelsmom]

I noticed the same thing yesterday!

There was also a string of comments about treatments people use and I noticed big differences in how pulmozyme is used. Some people said their docs tell them to do it an hour or more before vest . . . I had never heard this before. Another person said they take pulmozyme to treat what they called, "staff" -- someone else later tried to explain that pulmozyme is not an antibiotic used to treat staph.

Clearly, there is a lot of misinformation out there. It would be nice if someone from the CFF monitored the comments and stepped in with helpful links or something.

Mom to 6-year old wcf

 

[angelsmom]

I noticed the same thing yesterday!

There was also a string of comments about treatments people use and I noticed big differences in how pulmozyme is used. Some people said their docs tell them to do it an hour or more before vest . . . I had never heard this before. Another person said they take pulmozyme to treat what they called, "staff" -- someone else later tried to explain that pulmozyme is not an antibiotic used to treat staph.

Clearly, there is a lot of misinformation out there. It would be nice if someone from the CFF monitored the comments and stepped in with helpful links or something.

Mom to 6-year old wcf

 

[angelsmom]

I noticed the same thing yesterday!
<br />
<br />There was also a string of comments about treatments people use and I noticed big differences in how pulmozyme is used. Some people said their docs tell them to do it an hour or more before vest . . . I had never heard this before. Another person said they take pulmozyme to treat what they called, "staff" -- someone else later tried to explain that pulmozyme is not an antibiotic used to treat staph.
<br />
<br />Clearly, there is a lot of misinformation out there. It would be nice if someone from the CFF monitored the comments and stepped in with helpful links or something.
<br />
<br />Mom to 6-year old wcf
<br />

 

[Cherylwithone]

LIza, We have learned overtime that with CF, you can never say never. No one knows how it will affect each person since each person is different. To me CF is CF bottom line.
I agree with you about the CFF and them gettin on board with things. The last thing someone should be getting is wrong information.

 

[Cherylwithone]

LIza, We have learned overtime that with CF, you can never say never. No one knows how it will affect each person since each person is different. To me CF is CF bottom line.
I agree with you about the CFF and them gettin on board with things. The last thing someone should be getting is wrong information.

 

[Cherylwithone]

LIza, We have learned overtime that with CF, you can never say never. No one knows how it will affect each person since each person is different. To me CF is CF bottom line.
<br />I agree with you about the CFF and them gettin on board with things. The last thing someone should be getting is wrong information.

 

[hmw]

Yikes! Esp since the CFF is so widely known as a respectable source of information, it would be nice if they had someone keeping tabs on the discussions there and to help debunk some of the really obvious 'misunderstandings.' Last thing the CFF needs is a message board filled with misinformation attached to their name.

 

[hmw]

Yikes! Esp since the CFF is so widely known as a respectable source of information, it would be nice if they had someone keeping tabs on the discussions there and to help debunk some of the really obvious 'misunderstandings.' Last thing the CFF needs is a message board filled with misinformation attached to their name.

 

[hmw]

Yikes! Esp since the CFF is so widely known as a respectable source of information, it would be nice if they had someone keeping tabs on the discussions there and to help debunk some of the really obvious 'misunderstandings.' Last thing the CFF needs is a message board filled with misinformation attached to their name.