NYCLawGirl
New member
it also features bill elder - i know we have some colorado people here and mr. elder (now at stanford) goes to my old clinic at denver childrens. there are others on this board who go to that clinic as well, so we're all well connected!
amy, i think you're right in a lot of ways, but i thought this article did a fairly good job of presenting the hopeful aspects of cf without blowing smoke up people's butt too much. the new drugs on the horizon ARE super exciting, but yes, in the meantime way too many of us continue to fight and sometimes lose crucial ground to this evil disease. i'm obviously not likely to make it 5-10 more years without a transplant, so reading articles like this is always very bittersweet for me, but at the same time i an only hope this inspires every cfer out there to fight back as hard as we can. i guess you just never know, right?
the key for me is remembering that 1) cf is not yet a "manageable" disease, 2) no cf treatment (thus far) is universally effective so i should be happy and feel lucky when something works for me rather than assuming it works for everyone, and 3) all cfers are fighters and NO ONE'S insight or experience is less valuable because of his or her lung function numbers. period.
i'll mourn your friends (and mine) with you...and hopefully with every step we make towards making this disease more liveable we'll remember them and thank them - for the drugs they helped test, the money they helped raise, the doctors they helped teach, and the spirits they helped inspire.
amy, i think you're right in a lot of ways, but i thought this article did a fairly good job of presenting the hopeful aspects of cf without blowing smoke up people's butt too much. the new drugs on the horizon ARE super exciting, but yes, in the meantime way too many of us continue to fight and sometimes lose crucial ground to this evil disease. i'm obviously not likely to make it 5-10 more years without a transplant, so reading articles like this is always very bittersweet for me, but at the same time i an only hope this inspires every cfer out there to fight back as hard as we can. i guess you just never know, right?
the key for me is remembering that 1) cf is not yet a "manageable" disease, 2) no cf treatment (thus far) is universally effective so i should be happy and feel lucky when something works for me rather than assuming it works for everyone, and 3) all cfers are fighters and NO ONE'S insight or experience is less valuable because of his or her lung function numbers. period.
i'll mourn your friends (and mine) with you...and hopefully with every step we make towards making this disease more liveable we'll remember them and thank them - for the drugs they helped test, the money they helped raise, the doctors they helped teach, and the spirits they helped inspire.