lightNlife
New member
Recently someone (I think it was Sakasuka) mentioned how the Danish approach to tune-ups must work because Denmark has such high survival numbers. Well, that may be the case, but I think that like here, the number may be artificially inflated since only those who attend CF Care centers are being counted toward the totals.
I am in contact with a young woman in Denmark, and I was absolutely astonished by some of the questions she was asking me. Here's part of her email:
<div class="FTQUOTE"><begin quote>okay i think acapella is the one i call PEP-mask (Possitive Expiratory Pressure) but I have never heard of the vest!!? sounds a little weird but intresting!
The hypertonic saline treatment is one i have just request my doctor for. I think the doctors are a little slow with trying all alternatives on us danish CF's, it's like we have to figure it out ourselfs sometimes. They have this school/educationing about CF for CF teens, but when me and my sis was that age we already had the cepacia so we couldn't go to this school because of the fear of the spread of cepacia. we where young and didn't know that much and what to expect from the hospital so when they totaly forgot that we never went and got this educating, we actually didn't know of it. I think it would have helped alot, but that's the past, so im just trying to keep up now. </end quote></div>
I sent her a message about this website and encouraged her to check it out. Does anyone have any ideas about how we can make more of an international difference? I know the majority of the members here are North Americans. Perhaps someday in the future, the site can have a global contingent. That would be awesome. There are so many differences in healthcare systems, administration and policy.
Whenever I read an email like that one I just posted, I feel a mixture of frustration and gratitude. Gratitude for the way the treatments I have and clearly benefit from; frustration that there is still so much suffering involved in CF.
I am in contact with a young woman in Denmark, and I was absolutely astonished by some of the questions she was asking me. Here's part of her email:
<div class="FTQUOTE"><begin quote>okay i think acapella is the one i call PEP-mask (Possitive Expiratory Pressure) but I have never heard of the vest!!? sounds a little weird but intresting!
The hypertonic saline treatment is one i have just request my doctor for. I think the doctors are a little slow with trying all alternatives on us danish CF's, it's like we have to figure it out ourselfs sometimes. They have this school/educationing about CF for CF teens, but when me and my sis was that age we already had the cepacia so we couldn't go to this school because of the fear of the spread of cepacia. we where young and didn't know that much and what to expect from the hospital so when they totaly forgot that we never went and got this educating, we actually didn't know of it. I think it would have helped alot, but that's the past, so im just trying to keep up now. </end quote></div>
I sent her a message about this website and encouraged her to check it out. Does anyone have any ideas about how we can make more of an international difference? I know the majority of the members here are North Americans. Perhaps someday in the future, the site can have a global contingent. That would be awesome. There are so many differences in healthcare systems, administration and policy.
Whenever I read an email like that one I just posted, I feel a mixture of frustration and gratitude. Gratitude for the way the treatments I have and clearly benefit from; frustration that there is still so much suffering involved in CF.