tag:blogger.com,1999:blog-4799370907944551114.post7165178887182291421..comments2021-05-13T11:29:59.307-07:00Comments on Little Tad Pole, Big Pond: PTC124, my thoughts.Princess Jesshttp://www.blogger.com/profile/10016554702549722778noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4799370907944551114.post-61310086620573633982010-12-21T20:50:35.657-08:002010-12-21T20:50:35.657-08:00Hi. My son, Joey (age 7), has the stop mutation. ...Hi. My son, Joey (age 7), has the stop mutation. From the bottom of our hearts, we thank you for being in the study. And, my prayer is that you will benefit from it too! You are a warrior- stay in the fight!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4799370907944551114.post-38563640959742690112010-09-26T06:58:09.162-07:002010-09-26T06:58:09.162-07:00My two daughters are in the PTC124 study. They ar...My two daughters are in the PTC124 study. They are both improved in many ways. But beyond that, everyone should remember that noone knows what this drug is capable of, what your body is capable of on this drug down the line, 1 year, 5 years, 10 years. I'm a Lubavitcher Jew and as we like to say, "Think good, and it will be good."Devorahttps://www.blogger.com/profile/09025689348166071425noreply@blogger.comtag:blogger.com,1999:blog-4799370907944551114.post-49789610639636208192010-04-19T08:26:32.906-07:002010-04-19T08:26:32.906-07:00Aww Jess. I don't think PTC 124 "freezes&...Aww Jess. I don't think PTC 124 "freezes" thinks. from what I read, it just acts as a set of instructions for the CFTR protein to finish salt production, & that's it. I know you can work to regain your lung function (without worrying about other CF stuff holding you back.) <br /><br />However, I do understand where you are coming from. You're kind of stuck in limbo. - You're lungs are too sick for you to be comfortable; but they aren't sick enough to allow you to be a candidate for transplant.<br /><br />Remember that this drug will only help the CFTR protein do it's job, it won't preserve your lungs. You will still get sick like a normal person, and your lungs will still get a little more tired each time. <br /><br />It could really go either way. You could work your butt off & lung function could increase; or the world can make you sick a lot, & you could end up needing new lungs by force anyway.<br /><br />No matter what though, remember that I'm still terribly new to this. I've researched a ton on PTC 124, but I could still easily be wrong. I'm just giving you some food for thought :)Chelseahttps://www.blogger.com/profile/18326291863252010459noreply@blogger.comtag:blogger.com,1999:blog-4799370907944551114.post-67336014407805443422010-04-16T16:19:29.702-07:002010-04-16T16:19:29.702-07:00Hi!
I found your blog while CF-blog hopping today...Hi!<br /><br />I found your blog while CF-blog hopping today, but I remember you from cf.com and cf2chat, and from just being around.<br /><br />I just wanted to say thank you for doing the study. My Emily (age 4) is one of the kids who stands to benefit from PTC124. I'm grateful to everyone who is working to make it a possibility.<br /><br />Have a good weekend.<br /><br />Tami<br />(izemmom on cf.com)Tami Draxlerhttps://www.blogger.com/profile/04411463208279827415noreply@blogger.com