M
Mommafirst
Guest
Oh and Sara -- I ABSOLUTELY think that patients are suffering from PTSD as well.
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M
Mommafirst
Guest
Oh and Sara -- I ABSOLUTELY think that patients are suffering from PTSD as well.
T
TonyaH
Guest
You did an amazing job, Heather! So many words that speak all of our truths....beautifully written!
T
TonyaH
Guest
You did an amazing job, Heather! So many words that speak all of our truths....beautifully written!
T
TonyaH
Guest
You did an amazing job, Heather! So many words that speak all of our truths....beautifully written!
Well done! It is important for parents to remember that sibs of those with CF also suffer PTSD in various forms. I've written about my own experience with this in my book, "Sixtyfive Roses: A Sister's Memoir," which just placed in the Top 40 Finalists for Canada Reads.
Heather Cariou
www.sixtyfiverosesthebook.com
Heather Cariou
www.sixtyfiverosesthebook.com
Well done! It is important for parents to remember that sibs of those with CF also suffer PTSD in various forms. I've written about my own experience with this in my book, "Sixtyfive Roses: A Sister's Memoir," which just placed in the Top 40 Finalists for Canada Reads.
Heather Cariou
www.sixtyfiverosesthebook.com
Heather Cariou
www.sixtyfiverosesthebook.com
Well done! It is important for parents to remember that sibs of those with CF also suffer PTSD in various forms. I've written about my own experience with this in my book, "Sixtyfive Roses: A Sister's Memoir," which just placed in the Top 40 Finalists for Canada Reads.
<br />
<br />Heather Cariou
<br />
<br />www.sixtyfiverosesthebook.com
<br />
<br />Heather Cariou
<br />
<br />www.sixtyfiverosesthebook.com
thank you...your words are so painful for me to read - I was hyper vigilant (exercise, antibiotics, drugs, clinic appointments, etc) until my daughter reached 18 and then I avoided the issue in response to her new found independence (due to my inability to make any difference to her health/lifestyle choices) and now I have found myself suddenly reconnecting (mainly through this forum) with the CF community. She is now 22yo and her G551D mutation means she would probably respond well to VX-770. <div>Because of the cross infection issues with CF and the avoidance side of things I have not had contact with other people with CF. It is quite hard for me to confront it. I also have an avoidance issue related to the fact I was a registered nurse who nurse CF patients in the early 1980's who died of CF. This was prior to having a child with CF and even knowing I was a carrier of the gene. </div><div><br></div>
thank you...your words are so painful for me to read - I was hyper vigilant (exercise, antibiotics, drugs, clinic appointments, etc) until my daughter reached 18 and then I avoided the issue in response to her new found independence (due to my inability to make any difference to her health/lifestyle choices) and now I have found myself suddenly reconnecting (mainly through this forum) with the CF community. She is now 22yo and her G551D mutation means she would probably respond well to VX-770.Because of the cross infection issues with CF and the avoidance side of things I have not had contact with other people with CF. It is quite hard for me to confront it. I also have an avoidance issue related to the fact I was a registered nurse who nurse CF patients in the early 1980's who died of CF. This was prior to having a child with CF and even knowing I was a carrier of the gene.<br>
thank you...your words are so painful for me to read - I was hyper vigilant (exercise, antibiotics, drugs, clinic appointments, etc) until my daughter reached 18 and then I avoided the issue in response to her new found independence (due to my inability to make any difference to her health/lifestyle choices) and now I have found myself suddenly reconnecting (mainly through this forum) with the CF community. She is now 22yo and her G551D mutation means she would probably respond well to VX-770.Because of the cross infection issues with CF and the avoidance side of things I have not had contact with other people with CF. It is quite hard for me to confront it. I also have an avoidance issue related to the fact I was a registered nurse who nurse CF patients in the early 1980's who died of CF. This was prior to having a child with CF and even knowing I was a carrier of the gene.<br>
Thank yor sharing this. This is my life with 2 of my 3 childern. My husband is great but does avoid some of the treatments. In his defense he had a sister who lost her battle with CF in 2000. And this brings back alot of memories for him. I also couldn't get thru it without tears. Thank you I am not alone.
Thank yor sharing this. This is my life with 2 of my 3 childern. My husband is great but does avoid some of the treatments. In his defense he had a sister who lost her battle with CF in 2000. And this brings back alot of memories for him. I also couldn't get thru it without tears. Thank you I am not alone.
Thank yor sharing this. This is my life with 2 of my 3 childern. My husband is great but does avoid some of the treatments. In his defense he had a sister who lost her battle with CF in 2000. And this brings back alot of memories for him. I also couldn't get thru it without tears. Thank you I am not alone.