my son is just out of hospital

[katie4byz]

Hi Bill am in the UK so things work different here but I am not going to give up untill I have the answers that we need, what I mean by moving hospital and making things worse is that the other hospital may be worse than the one he is at then what do I do?
Thanks Becca's mom, no my son not had a sinus CT I could ask for one? Also yes the nebulizer is working brilliant hes clearing out everyday with it.

 

[katie4byz]

Hi Bill am in the UK so things work different here but I am not going to give up untill I have the answers that we need, what I mean by moving hospital and making things worse is that the other hospital may be worse than the one he is at then what do I do?
Thanks Becca's mom, no my son not had a sinus CT I could ask for one? Also yes the nebulizer is working brilliant hes clearing out everyday with it.

 

[Printer]

There has to be a CYSTIC FIBROSIS FOUNDATION or something like it in the UK.

There are patients on here from the UK.

Post a question: WHERE IS THERE A GOOD CF CLINIC NEAR _________.

Bill

 

[Printer]

There has to be a CYSTIC FIBROSIS FOUNDATION or something like it in the UK.

There are patients on here from the UK.

Post a question: WHERE IS THERE A GOOD CF CLINIC NEAR _________.

Bill

 

[albino15]

The UKs version of the CFF is called the cystic fibrosis trust, the web address is cftrust.org, they have a link to a list of CF centers in the UK

Just click on the "about cf" link then click on "CF care" you should see "UK specialist CF centres" hope this helps.

 

[albino15]

The UKs version of the CFF is called the cystic fibrosis trust, the web address is cftrust.org, they have a link to a list of CF centers in the UK

Just click on the "about cf" link then click on "CF care" you should see "UK specialist CF centres" hope this helps.

 

[CrisDopher]

The UK has the CF Trust, I believe. I have seen their lime-green jerseys while running the NYC marathon. (Them running, not me. Though I did that once, too.)

 

[CrisDopher]

The UK has the CF Trust, I believe. I have seen their lime-green jerseys while running the NYC marathon. (Them running, not me. Though I did that once, too.)

 

[katie4byz]

Hi yes done that and where my son is being seen is our local one, I would prefer my son not to have CF but if he has I want to know properly and get the Diagnosis. I just don't understand from what I am reading that people have a Diagnosis with one gene yet my son is'nt. I just don't know how to make sure my son is getting the best!

 

[katie4byz]

Hi yes done that and where my son is being seen is our local one, I would prefer my son not to have CF but if he has I want to know properly and get the Diagnosis. I just don't understand from what I am reading that people have a Diagnosis with one gene yet my son is'nt. I just don't know how to make sure my son is getting the best!