Its coming!

[anonymous]

My recent visit to my pulmonologist was supposed to be routine. Usually I go in, get my FEV shit checked and then as usual he takes some x-rays, tell me I've got another lung infection, prescribes TOBI, Cipro, Levaquine, or whatever and sends me on my way. Well, today was a wee bit different. Smiling, he told me that I didn't need to take the FEV test anymore and that while he did take x-rays and prescribed Levaquin, he told me that a colleague of his in Romania is fairly certain that my 27th birthday (I turned 26 only a few months ago), will be CF free. While my doctor did not want me to get too excited, he told me that the reports his colleague sent involving succesfull experimentation with retro virus introduction was more than promising, it was a success.Anyway, I'll tell you more as things become more certain.

 

[serendipity730]

I think it was VERY foolish for your doctor to tell you that and not do pft's. Over the years there has been a great deal of promising research but no cure. CF is a complex disease resulting from almost 1000's different mutations. Your doctor shouldn't play on your hopes like he did for us this is a matter of life and death.~ Mary 21yr old CF patient

 

[anonymous]

If his colleague is correct and there is a cure and everything works out just the way everyone would want, don't you still want to take care of yourself until then? I know it was your doc who said not to do the PFTs and not you, but you may want to demand them next time. Also, even if there was a cure found today it takes years to get things approved. I hope they have found something that will help CFers dramatically, but I guess I would still be careful and take care of my self as best as possible till then. I want to be in the best shape possible for the day that cure does come!

 

[anonymous]

Do you have any resources where we can get information on this cure? Is there a website or something written that patients can read?

 

[anonymous]

yeah, right.

 

[anonymous]

I am sceptical just like the rest of you, but if you put 'retro virus Cystic Fibrosis' in your search engine you will see there is promising breakthroughs for the CF community. When I read this post I decided to do some research...although from what I read I think it will be much much longer than a year or two before this cure, I am not even sure I will see it in my life time, but they are making advances and gene therapy may be the ultimate answer, if it is even perfected which they may not ever be able to perfect...I am not saying that you should stop treatments or depend on the cure to come soon because it may not, but for you who are interested try looking info up on gene therapy or retro virus its fairly interesting and is fairly exciting if not for us for the next generations with CF.