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about cystic fibrosis
- Feb 4, 2009 at 11:02 PM
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- Comments (31) Total Views (1084) Everyone can see this journal post.
What You Need to Know
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including:
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
- frequent greasy, bulky stools or difficulty in bowel movements.
Statistics
- About 1,000 new cases of cystic fibrosis are diagnosed each year.
- More than 70% of patients are diagnosed by age two.
- More than 40% of the CF patient population is age 18 or older.
- In 2006, the predicted median age of survival was 37 years.
The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters--patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
to donate visit : http://www.cff.org/Great_Strides/EricaFrye
Comments:
When my daughter was born a nurse that had her facts wrong called and told me my daughter HAD it well I cried myself to sleep for nights till we could see a specialist well when we went they did a sweat test and said she didn't have it but she was carrying the gene I wish I could choke that nurse out for being wrong and putting us threw that if it wasn't for sure. It did however make me very aware to it and what it dose and that it needs to be stopped I now donate as much and as often as I can I hope it is a fight that can be won.
My best friend in the whole world's son has CF. He is compeletly normal, and you wouldn't be able to tell he had it by looking at him. He does have a constant cough, and it seems like his nose is always running in the winter....He has to take enzymes before he can eat anything. He has breathing treatments. HIs mom does everything for him. She is my hero. She never complains, just does it. All by her self. I never knew much about CF until I met landon. Landon is growing just fine, as a matter of fact he weighs more then my daughter.....and he is younger....by 6 months....lol... I hope they find a cure soon.... My daughter and Landon are BF's
My mom's oldest brother died of cystic fibrosis at 3 months of age back in 1956. It is truly amazing how far medicine has advanced since then.
I lost a 12 year old sister to this on July 4, 1975. The first medications she had were powder that had to be mixed into all of her food. It would turn the spaghetti sauce black, and made most things look so unappetizing. My mom worked with a pharmacist to get the tools to turn the dosage into a pill that she had to press herself. She would next chocolate coat them for her, to make them more palatable. Guess who my hero is!
Also, she would have to do postural drainage three times a day. This meant basically laying her on an old-fashioned massage table, tilting her head downward, and thumping vigorously for awhile to bring up the unmoving phlegm/mucus. The cilia hairs we all have in our lungs to move this becomes damaged with CF, much like that of a veteran smoker. She would also have aerosol treatments a few a day, sitting with a mask and breathing in a special medication and then sleep in a mist tent. This was a large plastic canopy that draped completely over the bed and released a medication, like the aerosol treatments did, but all night. It would usually leave her damp, as it was akin to sleeping in a sauna without heat. Travel, even a day trip during the holidays, was a huge undertaking for my parents. If any of you can give to further advance the knowledge of this disease or help to bring a cure, please do so. More children die from this than cancer, yet so few even know what it is.
Wow! I wake up and this is #4! Awesome!! thank you everyone for voting and commenting, and thank you burnsbct for explain postural drainage. James uses an vest that shakes him up 3 times a day, but if hes really junky I pound the crap out of him too(its very effective). In fact my 6 yr old got hold of the papers one time and was "draining" a bear in the living room...lol.
One of my co-workers has a daughter that was born with Cystic Fibrosis. She is just darling, and by looking at her, you can't even tell she has it. But I talk to her mom quite a bit and I hear everything she has to do for her daughter. Since she's been born, her mom has decided to go to nursing school and work with pediatrics in this field so she can "give back". I applaud her on this, as she only has 8 more weeks until she's done! Just hearing about all she has to do for her daughter, along with all of her homework she has while in nursing school makes me tired!
My friend's gorgeous six-year old daughter has CF and she goes to elementary school and is in the same class as my daughter. Miraculously she lives an almost 'free' life even with the disease, and I love to watch her growing up into a wonderful young lady!
We also know a man that lost his son to CF. A cool story was that he was also an honorary Volunteer Fire Fighter at our local station. Any time the power would go out at his house, there would come the big ladder truck up the street so his machines could use their generator! So much love and care for him! He lived a great life, was able to get married and passed away in his 40's. He was able to accomplish so much in his life!
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When my son was born premature they told me they believed he had CF. The first test was inconclusive so we had to re-do it. I was terrified. What a brave wonderful mommy you are. I will pray for a cure and for your son.
- wildwesttravel
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