i am 29 y/o female with a daughter who has CF. the doctors all think i have it too, but just a mild case. whatever that means... anyone else here diagnosed as an adult? and do you know where i can get more info on "mild" cases of cf?
I know of people who have been diagnosed as adults in their mid-30s, I know of teenagers, older children... Some are people who have always had sinus or asthmatic type problems. More recently I met a woman who's grandchild was diagnosed as a toddler.
There are different mutations of genes that cause cf. The most common is the delta f508. DS has two copies of the gene, which occurs in the majority of cf cases. He was born with digestive problems; however, CF is a progressive disease -- it will progress, just happens at different speeds for different people
Some people are diagnosed because another child is diagnosed with the disease, so they run tests on other siblings and find that those children, who are healthy also have CF.
My brother was not diagnosed until he was 41-42 years of age. He had been sick off and on but for the first 41 years of his life, he did not see a physician on a regular basis. he was said to have diabetes and other issues, but never CF. He recently passed away and his death was contributed to CF. He was 45 years old. We are an African American family if that makes a difference. My daughter also had CF and was diagnosed at the age of three. Take Care!!
I was just diagnosed with CF over Easter break. I'm 20 years old; I was tested as an infant - the first test was 90 (positive) then they sent me to certified CF center where the tests kept coming back inconclusive (like 57-59 were mine), so they decided that I did not have it because most other CF babies has sweat tests in the 100's or higher.
My doctor recommended that I get re-tested for CF when I was about 12, but for some reason that never happened. I have chronic sinusitis and have been basically living on antibiotics for years; I also have exercise induced asthma, and a lot of other symptoms -- after looking them up randomly, I told my family I was giong to be retested, and my results were positive. I had blood drawn last week, and the genetic test results will be back in 4-5 weeks. If anyone else is an adult diagnosed w/ CF i'd love to talk/e-mail. I'm kind of depressed being away from my family (at college) and I don't really know what to expect, etc.
as for getting more info on mild cases - my doctor gave me a VERY informative book. It's called "Now that I have CF" - Information for Men & Women diagnosed as adults (I've tried to find it else where with no success, so maybe ask your doctor about it - it's published by Solvay Pharmaceuticals)
Im really sorry about you having CF. I also suffer from chronic sinuses and asthma. What were your other symtoms? I asked my ENT if I had it, but he said if you had it you would know it! Im not sure how to take that.
asthma and chronic sinusitis are pretty much my only symptoms right now, i guess because i have a milder defect (I'm not sure exactly though - i get my genetic results back in a couple weeks). My sweat has always been kinda salty, which is common in CF.
My doctor recommended that i get re-tested for CF when i was about 12, but i refused to do it because I didn't see the point- I thought if I had it i would for sure know by then, and that they would have caught it earlier. I decided to get retested when I was 20 (a couple months ago) simply by researching it and reading about adults being diagnosed more frequently. Some other minor symptoms I read about and sometimes have are small growths inside my nose, constipation & digestive problems (this hasn't been a huge factor for me - in fact i never even related it to anything else i just thought it was normal. i don't think i have the pancreas problems like most people experience). hope that helps!
I was just diagnosed in September, at age 21... (and I'm still 21, haha) anyway, I was diagnosed because I started having a lot of stomach problems, that kept getting misdiagnosed as stress or IBS (not so) since I was born I have had bad asthma and always getting bronchitis, pneumonia and sinus infections. I finally got a referral to a GI doctor who found gastroparesis, ulcers, and scarring in my bowel, and he said I should get tested for CF, and lo and behold I had it (which is strange, because I am overweight!) but as I've come to find out, there's no "typical" CF.
You can be diagnosed as an adult. It is true. Concerned2 sorry for you lose. I have 2 sons w/cf and the doctors all think I have it. I am 23 and have less then 40% lung capacity as well as many lung stomach sinus problems also diabetes. I am having to do a bunch of other test to rule every thing else out first.
I wasn't quite diagnosed as an adult, I was 16. And really should have been diagnosed earlier but up until then no doctors had put my symptoms together! I always had an overload of mucus and gag and choke it up. Starting at around age 8 every morning when I got up I would have awful coughing attacks that ended in gagging and choking and bringing mucus up. I had sinus problems from an early age, was not really tiny but was small and had some GI issues and couldn't tolerate heat at all. I would get overheated and dehydrated really easy. We had a trampoline and when I would jump one it I would cough and choke and bring up mucus...little did I know that this is a reccomended form of physio for CF kids!
Before being diagnosed with CF I heard everything from I was faking it(how do you fake gagging and choking up mucus and coughing?) to allergies to asthma to reflux. My lung problems had gotten so bad I couldn't attend school or anything. Thankfully my parents were persistant and finally ended up with a good doctor that was determined to find out what was wrong with me!
hi i get all the asthma like symptoms and make thick mucus london con says i don't have asthma. the musus has been named as bronchorrea which just means over active lung glands. I have had a sweat test done it came back normal. At the mo i keep asking about DNA testing and keep get told no. Has anyone had a normal sweat test done and then the DNA test come up with cf. I have found info about 1-2% of cf's do have normal sweat test can anyone help love smilersmile