adult onset cystic fibrosis

I read your post. Im not sure how long ago you posted. But I want to thank you for your in depth details. This is going to help me and my boyfriend tremendously. He is going through the same scenario. I wish you well

there are so many people who are misdiagnosed with mimicking diseases. for the last 12 years I had severe depression which miraculously went away during my antibiotic treatment for lyme. spirochetes attack you where you are weakest, which is different for everyone. please listen to the last writer and go see a lyme literate medical doctor. just google "LLMD near me"

I developed pancreatitis attacks at the end of February this year that steadily worsened in severity and frequency. By the end of May/early June it was noted by my family physician that I had developed asthma. As the pancreatitis continued to progress and I was diagnosed with chronic pancreatitis, along with malabsorption and vitamin/nutrient deficiencies (I dropped 20 lbs in 4 months... I'm now down to 91 lbs. and am 5'4"), the GI doctors in my city dumped pain and nausea medications on me and left me with no other answers and no additional appointments for anything but refills with their NPs. I refused to accept that and got a referral to one of the best medical hospitals in the state to see a leading pancreas specialist. He diagnosed me with adult-onset cystic fibrosis after his examination and reviewing my medical and family history. I was completely shocked to say the least because everyone in my family developed it as babies. He explained that something in the past year activated my gene mutations and here I am... I'm 33 and trying to figure out my life now and what in the heck I'm supposed to expect.

For those of you upset about the "adult onset cystic fibrosis" diagnosis, remember, Huntington's Disease is a genetic disorder that is adult onset. It means that the despite the person having the genes their entire lives, their symptoms didn't come on until adulthood. And just because you have the genes for something, doesn't mean that you are guaranteed to develop it in every single case. If I'd been killed in a car accident last year, I never would have developed cystic fibrosis. While most people have the common CF mutations that cause the traditional form of CF that is often diagnosed early, not all of us do. Individuals with the BRCA1 and BRCA2 genes do not run around telling everyone they have breast cancer and ovarian cancer just because they have the genes. They know they're at risk, but are not diagnosed with cancer until symptoms arise.

Dementia is not a symptom of Cystic Fibrosis. Please do your research before posting inaccurate medical information.

Wrong. You likely didn't recognize any symptoms of CF before you were diagnosed, or you had very mild symptoms that just didn't register.

You cannot "develop" Cystic Fibrosis. You either have the 2 mutated genes or not. The level of disease and organ involvement varies from person to person.

The gold standard of diagnosis is the Sweat Test. If you think you might have CF, contact a CF center near you.

Actually, I was given the sweat test twice, and both times the results were negative. Genetic testing and my host of symptoms, however, proved that I most definitely have CF.

I have what is called Adult Onset CF
I was diagnosed at age 58 with M.Aviam. typically tall, slim post menopausal woman.
When the genome was discovered, testing revealed 3 out of 4 CF genes
I use an inhaler, a mucus clearing device and the M. aviam is ok. So only antibiotics when lung infections arise.

Skygodfla
and I currently live in South Florida . I was diagnosed with cystic fibrosis at 21 years of age.. I was always Ill when I was young and at 4 months old I had pyloric stenosis which is common with people with cystic fibrosis,,,,,,which I was operated on for havinng. Somehow it seemed to just slip by the doctors. And 61 years of age and I have complications in addition to having the cystic fibrosis,,,, I have mycobacteria ,,,also known as mycobacterium avium complex...
I have done tremendous things in my life despite the cystic fibrosis. I had become a competitive bodybuilder and won an NPC title,,,,the War Memorial Theater in fort lauderdale florida ,,,,in 1998 ,,,,and the title was for,,Mr. Southern States. As a competitive bodybuilder,, in South Florida ,,I seem to have gained a respect from my peers of which I did not have in the past for I was very skinny and very frail looking.and did not get ,The Feats that I have accomplished and survived through are truly amazing and for that I think a higher power I choose to call God. With the help of my instructor Joe from Air Adventures in Clewiston Florida, I also became a skydiver. I have done tremendous things with this disease and had almost died several times throughout my life different illnesses from having the cystic fibrosis. I am dictating to my telephone from a hospital bed ,,,for I would rather be doing this on a computer in my hometown insouthFlorida.I just wanted to inform anyone who takes the time to read this,,about some of my accomplishments. I have other. accomplishments that I can not to discuss nos,,however: should you ,,.care to talk to me ,,I would love to speak with someone else that has this disease that is also an adult for I have not spoken to many adults with this disease,, cystic fibrosis,,and would like to do so sometime.
Sky

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I am 56 and Friday was diagnosed with CF via sweat test at Childrens Boston They took my blood for the Gene testing. I have been sick off an on for 5 years. In the last year I have lost 65 pounds, the ability to gain weight and eat without pain. Ive had pancreatitis from which I feel I will never recover. I am glad to know why and what is causing my illnesses. I am glad to have found you all here

Would like to talk. .I think I have cf too..

When I was a baby, my mom said I was tested for cystic fibrosis but it was negative. Fast forward 38 years later, and I'm having serious digestive problems, polyps the size of grapes, and my rib cage has actually expanded by noticeable amount. Also, I'm having a hard time breathing out. I keep telling the doctor that something IS WRONG! The swelling and pain I have is exactly where the pancreas is. Honest to God, I feel like I have this, but I didn't think it was possible due to my age.

I would imagine that they always had the CF, and they were just continually misdiagnosed.

Hi,

My son was born in 1999. Genectic testing wasn't mandatory till 2010. We've struggled with lung infections since 3 days old, stomach pain started at 1 year old and he couldn't walk, inability to gain weight, nose polyps and surgery at 16...he has had Kaiser insurance since birth. The diagnosed him with asthma not appropriately...no lung function test. This year I asked he be tested for CF...Kaiser said no unless I show them I've been tested to be a carrier. I'm at a loss now. I just feel I'd like to r/o CF.

Hi, I am so sorry that this has been your experience. I am currently 8 months pregnant and my baby during genetic testing came positive for CF, as a carrier, although it is not known whether or not he will have it, until he is born. This concerns me because in 2013 at age 23 I started having severe problems, GI problems involving severe weightloss.... after seeing a GI for some time, he performed an incredibly unprofessional colonoscopy on me and that's when I gave up seeing him. I was diagnosed with fibromyalgia a few months later, but my vomiting and GI problems never subsided, I was just put on tramadol and flexeril and a sleeping medicine to help me gain weight, control my pain, and sleep. It has helped me stabilize, but the vomiting hasn't stopped, and I never feel "well." I have had pneumonia a few times in my life, but other than that no lung problems..... do you think this is worth being tested for CF? I am 26 years old now and worried mainly about my child being born with CF and me being the one to give it to him. How do I get DNA testing for CF? Is it covered by insurance? I am currently on insurance provided by the government and worry that if I am diagnosed while having this insurance that a private insurance company will not cover it in the future. How do I get the testing? Thank you so much for your help.

Hi Arwen,Your story is similar to mine. I have also just been diagnosed with atypical cf at the age of 48. No particular family history but my Gran did have recurrent respiratory problems from her mid forties and idiopathic pancreatitis with no history of smoking or drinking. She was diagnosed with COPD....probably wrongly.
I was diagnosed with adult onset asthma 10 years ago but was told recently that I do not have asthma at all...my symptoms were actually the start of my CF genetic condition affecting my lungs. I had a few chest infections in my teens and twenties but had a normal childhood and was not a sickly child. My gene defects are rare and my blood is currently being properly genetically analysed to identify the exact genes responsible. My sweat test was normal and my pancreas is unaffected.
I had a bad chest infection last year and then was sent for x rays and eventually a CT scan which showed diffuse bronchiectasis. My consultant tested for various other causes of this and was about to shrug his shoulders and dismiss the cause as unknown when I was fortunately passed on to a bronchiectasis expert who was attached to the teaching hospital I attended, and he began to test for CF.. which he found....along with a nasty NTM, MAC infection that I have to fight for the next 2 years on strong antibiotics to get rid of.
My father was also diagnosed with adult onset asthma but I think he may also have CF. He will be tested in due course.
How many others are there like us out there that are walking about with CF and it being diagnosed as COPD or asthma? This is the most common life limiting genetic defect in this country and the genes have over 2000 possible mutations so why are so many people with lung deterioration simply labelled with asthma or chronic bronchitis or COPD (Which means nothing anyway...like being diagnosed with a sore back for back problems) and not tested??
Doctors need to do something about this and fast!