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- Thread starter katie4byz
- Start date
Katie, this site has members from around the world, but yes, you'll see a lot of US terminology. Pulmonologist is respiratory consultant in the uk, I think. ER is A &E. I agree with liza (ratatosk) that pursuit of cf diagnosis with full genetic sequencing is less common in the uk. I get this impression from the uk site "bronchiectasis r us" where a number of people seem like they would have a cf diagnosis if they had more comprehensive testing.
You should check it out, especially if you are told your son doesnt have cf but CT scan shows bronchiectasis. Its a mostly uk message board for bronchiectasis-- a kind of lung damage caused by CF, immunodeficiency, cilia problems and more. I would still spend a lot of time here though because the quantity of useful information is very high. Moreover, treatments seem to start with the cf population, then get passed along to people with bronchiectasis later, but non cf docs aren't always aware of them and are used to dealing with a population in their 60s and 70s.
Best of luck.
You should check it out, especially if you are told your son doesnt have cf but CT scan shows bronchiectasis. Its a mostly uk message board for bronchiectasis-- a kind of lung damage caused by CF, immunodeficiency, cilia problems and more. I would still spend a lot of time here though because the quantity of useful information is very high. Moreover, treatments seem to start with the cf population, then get passed along to people with bronchiectasis later, but non cf docs aren't always aware of them and are used to dealing with a population in their 60s and 70s.
Best of luck.
Katie, this site has members from around the world, but yes, you'll see a lot of US terminology. Pulmonologist is respiratory consultant in the uk, I think. ER is A &E. I agree with liza (ratatosk) that pursuit of cf diagnosis with full genetic sequencing is less common in the uk. I get this impression from the uk site "bronchiectasis r us" where a number of people seem like they would have a cf diagnosis if they had more comprehensive testing.
You should check it out, especially if you are told your son doesnt have cf but CT scan shows bronchiectasis. Its a mostly uk message board for bronchiectasis-- a kind of lung damage caused by CF, immunodeficiency, cilia problems and more. I would still spend a lot of time here though because the quantity of useful information is very high. Moreover, treatments seem to start with the cf population, then get passed along to people with bronchiectasis later, but non cf docs aren't always aware of them and are used to dealing with a population in their 60s and 70s.
Best of luck.
You should check it out, especially if you are told your son doesnt have cf but CT scan shows bronchiectasis. Its a mostly uk message board for bronchiectasis-- a kind of lung damage caused by CF, immunodeficiency, cilia problems and more. I would still spend a lot of time here though because the quantity of useful information is very high. Moreover, treatments seem to start with the cf population, then get passed along to people with bronchiectasis later, but non cf docs aren't always aware of them and are used to dealing with a population in their 60s and 70s.
Best of luck.
D
DrRoe
Guest
Katie, I noted that you are waiting for the results from a gene test. In the meantime I would push your doctor to identify and treat any bugs growing in his lungs. Once you have the results you can work from there.. Good luck. I was happy to see that NHS encourages blood tests at birth now to sequence for CF genes. In older children/adults they encourage it if the sweat test is borderline (http://www.nhs.uk/Conditions/cystic-fibrosis/Pages/Diagnosis.aspx).
(sorry for all the edits.. my brain and fingers are not working in concert today.)
(sorry for all the edits.. my brain and fingers are not working in concert today.)
D
DrRoe
Guest
Katie, I noted that you are waiting for the results from a gene test. In the meantime I would push your doctor to identify and treat any bugs growing in his lungs. Once you have the results you can work from there.. Good luck. I was happy to see that NHS encourages blood tests at birth now to sequence for CF genes. In older children/adults they encourage it if the sweat test is borderline (http://www.nhs.uk/Conditions/cystic-fibrosis/Pages/Diagnosis.aspx).
(sorry for all the edits.. my brain and fingers are not working in concert today.)
(sorry for all the edits.. my brain and fingers are not working in concert today.)
Thank you all for your post and with what seems like a life time of wait I got a call to go see the CF doctor next week with my son as the genes test is back and shows Delta F508 so now further full genes test are underway I just dont know how to feel or what this even means?
Thank you all for your post and with what seems like a life time of wait I got a call to go see the CF doctor next week with my son as the genes test is back and shows Delta F508 so now further full genes test are underway I just dont know how to feel or what this even means?
M
Mommafirst
Guest
We spent a lot of time in limbo...with borderline sweats, one common mutation and then further genetic testing too. It was really frustrating and a very difficult time. By the time we learned that she had two CF mutations and earned a diagnosis (5 months), my husband was sure that it couldn't be CF and I was sure that it was. Hang in there.
M
Mommafirst
Guest
We spent a lot of time in limbo...with borderline sweats, one common mutation and then further genetic testing too. It was really frustrating and a very difficult time. By the time we learned that she had two CF mutations and earned a diagnosis (5 months), my husband was sure that it couldn't be CF and I was sure that it was. Hang in there.
imported_Momto2
New member
Not everyone has borderline sweats!
Some of us are just born to corrode..........
*GRIN*
Some of us are just born to corrode..........
*GRIN*
imported_Momto2
New member
Not everyone has borderline sweats!
Some of us are just born to corrode..........
*GRIN*
Some of us are just born to corrode..........
*GRIN*