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I have a different pov, as the parent of a young woman now in her late twenties who is thriving. I understand what Baco is saying, but there is a point at which nagging just doesn't work. In our experience, giving her the facts (here's what CF is and what it can do to you if you don't take care...
Go to a hospital with a CF Center. Even the best hospitals without CF centers don't really understand this disease and its symptoms. You can check the CFF.org website to find the centers all over the US. A CF center will be most likely to get you tested correctly and will take your symptoms very...
It makes sense to me that it's all about control with her. I wonder whether there's a way to have her take control of her own treatment in some ways. For instance, with my son, we let him choose one treatment a week to take off. It was his choice when to do it--so if he had a sleepover, he could...
I hate to say this, but my experience is that breast milk alone is not enough for a failure-to-thrive kid with CF. I was also an exclusively breast-feeding mom when my son was diagnosed at 4 months old, and he never gained sufficient weight. Once he started taking enzymes, things got slightly...
We also do a yearly fundraising for the Great Strides walk. We always send an emotional letter, and it's very successful. Basically, we tell people how it is: this is a progressive disease and we are in a race against time. We tell them the equation that makes us ask for their contribution...
We also do a yearly fundraising for the Great Strides walk. We always send an emotional letter, and it's very successful. Basically, we tell people how it is: this is a progressive disease and we are in a race against time. We tell them the equation that makes us ask for their contribution...
Yes, you are reading that right. My rural doctor also missed many of the signs, even when I was sure that my son had CF. He said I had an over-active imagination, though he'd known me to be perfectly calm with my older son. Your child may not have CF, but the only way to know for sure--and to...
Yes, you are reading that right. My rural doctor also missed many of the signs, even when I was sure that my son had CF. He said I had an over-active imagination, though he'd known me to be perfectly calm with my older son. Your child may not have CF, but the only way to know for sure--and to...
It's true that mutations don't give a huge amount of info about outcomes. However, as you said, it can be useful to know. You can go to this web address:
http://www.genet.sickkids.on.ca/Home.html
and search. I think the easiest way is to choose "search," then choose "text," and then enter...
It's true that mutations don't give a huge amount of info about outcomes. However, as you said, it can be useful to know. You can go to this web address:
http://www.genet.sickkids.on.ca/Home.html
and search. I think the easiest way is to choose "search," then choose "text," and then enter...
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