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I wonder if the CF Foundation is in the business of helping CF patients or in the business of fishing for business for big pharmaceutical companies. What do you think? After all, the Foundation has little to offer in terms of benefiting the average CF patient with financial assistance...

I sort of agree with the last statement. My CF doctors get this deer-in-the-headlights look every time I mention the idea of anabolics. I think there exists too much taboo and confusion in the medical field around this topic.My only concern is how much my liver might be affected by the use of...

Do you guys read any of these postings before you comment? DOUBLE DELTA F508 IS A DIFFERENT MUTATION THAN THE DELTA F508. THE DOUBLE MUTATION IS RARE, AND THE SINGLE MUTATION IS THE COMMON MUTATION (PRACTICALLY THE GENETIC DEFINITION OF CF). Literacy is paramount to any commentary. Thank you.

(Furthermore...) --The following is a bit rigorous, and dramatic, but it is so to make a point. So, don’t critique it without this consideration…-- Think about it. We don’t have the natural digestive benefits of pancreatic enzymes. So we should be eating food that is rich with its own...

First of all, I didn't say that all CFers eat garbage. I didn't even reference what any particular CF patient eats. I said CF dieticians push garbage. I said Scandishake was garbage. Second, how do you know whether or not I am having or have had a weight problem? Perhaps I speak from the...

He did die, though do not all living things die? I hope you don't have a problem with death -that would be tough. At best, Beowulf died after having living a full and adventurous life. Beowulf defeated the monstrous Grendel and Grendel's mother, saving Herot. Rewarded for his heroics...

I am not clear as to what "Vaporizer" means, though if it is a form of humidification, I would recommend you refrain. Since a baby doesn't have any lung control, or the ability to manipulate coughing, I would strongly discourage too much exposure to a humidifier/vaporizer. A little may help...

Beowulf was a great warrior hero, of great honor and strength. The poem Beowulf is a 7th century poem about encountering the monstrous, defeating it, and then having to live on, physically and psychically exposed in the exhausted aftermath. The poem also transcends such considerations...

There are two different types of steroids: cortisone or prednisone type steroids and Anabolic Steroids. I know Cortisone types are horrible and should be used only in desperate or emergent situations. I had prednisone and it really made my life worse in the long run. As for the anabolic, I...

Is DF508 the same as Delta F508 or Double Delta F508? If you mean the double mutation, I definitely have the Double Delta F508 mutation. This is not a common mutation. The Delta F508 is common. I do have pancreatic issues, though they manifest in an indirect way. I take digestive enzymes...

Thanks for the input. I can't say I know too much more about porta-caths than what you all have told me. I have had about a dozen or more mid-lines and PICC lines and I have been lucky that I have only scared twice, and the scares are minute. Unfortunately, with all those lines, my veins are...

There are over 900 mutations, 90 of which are most commonly observed in the population. If you are lucky and you have a mild mutation then, with the medications out there for CF you can live a long and relatively normal life. If your mutation is a more common one, or one of the mutations that...

Vickysmommy, I know CF affects many systems in the body, I have CF...But most CFers die of lung complications, hence lungs are the most significant organ damaged by the disease. Most of the other organs with cf problems are reasonably managed with meds and don't lead to a terminal condition...

Also, your son isn't necessarily infertile. He just is likely to not have a vas deferens. When he is older and wants to have kids, he might be able to consider a MESA or a PESA, two slightly different fertility procedures. It is where they aspirate the testicle and retrieve what they need for...

Pic lines are great, though be advised one can have only so many pic lines before their veins scar up and then you'll need a permanent sub-dermal IV lock, I think its called porta-cath. I am quickly approaching this point. I hate the concept of conceding to the disease in this way...

I am approaching my 33rd birthday and was diagnosed at birth. I have a double-deltaF508, which, as I am told, is a very bad mutation. However, the fact that I am still around tells me a couple of things... They don't know everything. They can be wrong. Despite that I have CF genes, I...

Currently, spinning (indoor cycling), and swimming (though rarely) if i can find a good pool. Hiking sometimes. M/33/CF

I have to add one more thing. Running is one of the physically toughest activities on the body due to stress impact and the demands it makes on your cardiovascular system. Even when I had strong lung function, running took extra will to perform. A smarter exercise would be cycling (outdoors...

Shamrock, Yes! Though, I don't agree with Emily65Roses with regard to "to a degree". You can do anything you put your mind and will behind. The only distinction is that you have to take things a little slower and be smarter than most others, and you have to be patient with the results you...

I am extending a few assumptions in my statements. First, to clone your own lungs less the cf gene would give you perfect lungs, as similar to your own without cf. e.g., no transplant disease. If they can clone lungs they can remove the erroneous cf gene. Like I said, it is way off. No way...