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I don't think they are withholding a cure from us. Gene therapy has not been successful in any genetic disease. They thought it would be an easy fix once they discovered the gene, but they were wrong. I don't really believe that they will ever find a cure for CF in the sense that babies will no...

Dave, I think that is a great idea. I know my teenage years were also particularly tough, and I think this is an issues VERY overlooked in the CF community. If you end up doing this, I would love to contribute.

The last time I went to the Dr's by FEVI was 81% <img src="i/expressions/face-icon-small-smile.gif" border="0"> That was an 11% pt. increase from the last time I had done then. Prior to going on Hypertonic Saline, my PFT's were usually in the low 70's. My FVC is around 90%, I believe.

Yes, usually people who can't afford to give much are the generous ones. I was mostly just upset that people who are supposed to be my friends did not give at all. Overall, my family raised over $4,500 (about $1,500 of that is from my father's business associates.) So, obviously some people are...

Hi. My family and I always do the Great Strides walk. This year, I am in grad school in a small class of 11 other girls. So, I hung up my sponser sheet in our little graduate lounge with a little message about the walk, asking people to sponser me or participate in the walk. Other than my...

I had sinus surgery last summer. It wasn't bad at all. Actually, the worse part for me was the intubation. I had a really sore throat for like 5 days afterwards and couldn't eat much of anything. Hopefully, that won't be an issue for you. I prob just had a bad dr. do it or something. I don't...

Good luck! Please let us know how it turns out.

I hope that you aren't considering doing this, but I imagine it would take varying degrees of time before one woul d succumb to the disease, depending on current state of health. I think that not taking enzymes would prob be more catastrophric, because you would essentially starve yourself...

Hi, I am in NJ, right near Philly, though. Feel free to im me, my sn is serendipity730.

Hi, I was diagnosed with CF at birth, so it has always been a fact of life for me. Of course, what having CF meant to me changed drastically over the years. So, I guess I am just wondering what it was like to find out you had CF as an adult. Do you think you would have done things drastically...

Sami, No! You are definitely not being oversensitive! Heck, if that had been me, I would have been ready to hit him and burst into tears at the same time. I think that depending on how comfortable you feel with your boss (probably not much after that) I would let him know that his comment...

I was just on the CFF web site. One of their headlines is "Median Survival increased to 35.1 in 2004." That was over a 2 year jump from the last year. It isn't much, but every little bit helps.

I have never really understood why people go to such great lengths to have a child of their own, either. I plan to try to have my own children, but I am pretty sure I wouldn't try IVF if that's what is necessary. Thankfully, my fiancee isn't a carrier, so I won't have to worry about the baby...

My fiancee is pretty good about it. He understands it is just part of the disease. I try not to do it in front of him, but sometimes it can't be helped. To be honest, I usually feel more embarassed doing it around my friends, who certainly do not know me as intimately as my fiancee.

Congrats, supermanfan! How old were you when you had your transplant?

I've blamed God - not anymore though. Maybe things happen for a reason. CF has shaped who I am today, despite many trials and tribulations. I think most of us could say the same thing. But sure, I've blamed God. If not, who is there to blame other than your parents? I think I would rather be mad...

I was diagnosed at birth, because I had meconium illeus. Only about 10-15% of people with CF are pancreatic sufficeint (i.e. their pancreas produces enough enzymes for the intestines to digest foods.) But, those 10-15% have respiratory problems but not digestive problems. That is mostly...

I take enzymes with everything, I always have. Unless you really can't afford to pay for enzymes, is it really worth the potential consequences (drinking that disgusting Go-Lytely stuff.) Besides, enzymes have more than just lipase (the enzyme that breaks down fat) in them. Fruits and vegetables...

Ok, I think that the drug industry is evil, but people also want the fame of curing a disease. Some genetic disease that involve enzyme deficiencies (not pancreatic enzymes, ones found throughout the body) have been practically cured. For these diseases, enzyme replacement therapies have been...

Gene therapy turned out to be much more complex that originally thought. There are a lot of ongoing projects, particularly at Johs Hopkins. However, I certainly expect a cure in my lifetime, hopefully, in the lifetime of babies born now with CF.