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Cystic Fibrosis Message Board

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[QUOTE=Ksavage]WOW! I just re-read my post and that does horible! I am sorry for the way I put that question.

I was diagnosed with Epilepsy about 4 years ago and people started to treat me very different. I had some peole that wanted nothing to do with me and then other only wanted to talk about my seizures. I did not like either of the two choices. The ones that wanted nothing to do with me was out fear of the "un known" and not knowing what to do if they were with me when I had a seizure. And the others acted like my life had no other meaning than to talk to the about injuries I had during the seizures and blah blah blah.

I gues that it what I meant by how I should treat her. I don't want to make her feel the way I was treated. I just thought I would come here to find out as much as I could. We know eachother and that is basically it. I do not know what we have in common, but I am more than willing to find out.

I know more than anything how much she needs a good friend to be there for her, I just want to be very careful and not step on any toes and put my foot in my mouth. I am sure she is going to have some of the same problems I had when I was diagnosed, I just do not want to be one of those people. She has more than enough to worry about at this point. I also know her husband and I am not sure how supportive and understanding he is going to be of her feelings.

I just want to know how to be there that is all.

I promise I am know where as tacky as my 1st post sounds! :D

Thanks again,

You've asked for an explanation of CF...
Cystic fibrosis is a genetic disorder affecting the lungs, pancreas, and hepatobiliary tract (liver, basically. lol). For a child to have CF, he/she must have inherited one mutated gene from each parent (each parent is a carrier of the disease). These mutated genes cause problems with salt regulation in the body and in turn, the body makes a very thick, sticky mucus that clogs the lungs and pancreas, leading to breathing problems (e.g., chronic bacterial infections) and difficulty in digesting food, due to a deficiency in enzymes that the pancreas secretes.

CF is usually diagnosed through a sweat test when a child exhibits difficulty in gaining weight or recurrent lung infections. My guess is that your friend's child was diagnosed this way, as most children that young are easy to diagnose. If a sweat test comes back inconclusive, or the child just didn't sweat enough, a genetic blood test may be performed. This test looks specifically for genes that cause CF. However, because there are so many mutations out there, a genetic test may also prove inconclusive. I won't get into details, but there other other tests that can be done if there is still a high suspicion of CF.

CF can be treated a number of ways, some of which are chest physiotherapy (CPT, which involves clapping on the back in various positions to drain excess mucus from the lungs), aerosol treatments with a nebulizer to help loosen mucus and treat infections, oral antibiotics during infections, pancreatic enzymes to help digest food ... and many, many more. In addition to lung and pancreas problems, some CFers may develop diabetes (a pancreas problem, but hey..), chronic sinusitis, liver problems, gallbladder disease, and are more prone to arthritis.

The main goal in CF treatment is to prevent lung infections before they begin, loosen as much mucus as possible (which falls under preventing lung infections, heh), and to have the child live as normal a life as possible.

Cystic fibrosis is the most fatal genetic disease out there. Despite all these treaments, many die in their teens and twenties. However, the average life expectancy is 30 years old, and that number is climbing!

Well, now that I've turned that into a book... lol. :p

Most parents would want to be treated the same way you'd treat them if their child didn't have CF. Sure, when their kid is sick, you ask how he's doing and all, but don't make a big huge deal out of it. You probably know this. If the subject of CF comes up, just be supportive. Let her know that you're there if she needs to talk, etc.

Hope that all made sense. lol.

Take care.

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