adult onset cystic fibrosis

More Like there is a chance given the severity of there CF that they can live a normal life. Have had 2 younger sisters pass away from this and I too have it and well at 27 its not looking like i have that much farther to go, in addition to all the heartaches that having this crapy disease causes, it wears away at you and can make your world fall apart and make it so you cant support your self or your family. Those who are diagnosed with this early on that may have a chance I herd some great advice already listed remain proactive in researching about it and take any and all prevenative medical measures you can cause if you dont there is a good chance it will creap up on you and there wont be any way to stop it from worsening.

I was healthy all my life, though a bit on the skinny side and unable to gain weight. I had a lot of sore throats and sinus infections. In 1999 I developed a sinus infection. Two years, countless specialists (allergist, immunologists, etc), and a lot of medication later, I was walking out of my doctors office, and he said "this is impossible but here, just for the h**l of it. It was a sweat chloride test. My sweat chloride was through the roof, even though no one in my family had CF. The test was repeated twice with the same results.

It turns out that I am one of about 2,000 people in the world with adult-diagnosed CF (I was 46), and with no known genetic variant, and a minimal digestive component.

I've been pretty sick a couple of times with pneumonia but pulled out of it.

The hardest part is trying to follow a medication schedule, and work, live, etc. All I can say is that yes, there are definitely people who can be diagnosed for the first time as adults with CF. It's harder if there is an unknown genetic variation, and no family history of the disease (though this is very rare).

 

i have had many health problems that are getting more severe and now causing lung probems that remain undiagnosed.  drs were leaning towards wegeners vascultis which attacks sinus and lungs as well, very similiar too cf.  my daughter is pregnant and just found out she is a carrier of cysstic fibrosis gene. could i have this????? i have never had a dna test or sweat test,  actually about the only testing i HAVENT had done yet.

On what do you base this on?  One thing I've learned throughout my lifetime is never judge another person.  You do not walk in their shoes.

CF is a GENETIC disease, which means you are born with it--you don't just develop it.  While you may discover symptoms later in life, if you are diagnosed with CF, it means you've had it all your life.  I don't think that "adult onset" is a proper term, because that makes it seem like CF can emerge at any time!  Not true!

My 64 year old husband was just diagnosed with CF.  What a shock! He has been a chronic asthmatic since age 17,  became steroid dependent, has psudomonas, has had apergillus but no more of it.  He is now anemic but up to 5 years ago, he had been very physically active, ate well, rode 100mile bike rides played professional baseball etc.  The steroids have caused osteoperosis so instead of being his 6ft 3inch height and 210 lbs, he is now 5ft 10 inches and 154 lbs. and has suffered a broken hip, broken arm, and now bone infection.  He takes tobrymycin every other month as well as a variety of other meds.  His belief in Christ, and his strong determination keep him positive, and working full time as a general contractor.

karen

Ugh....if you have cystic fibrosis, you've always had it, you just didnt have a severe case of it.  Depending on the mutations and what genes you have will display different problems with your disease.  I do recommend going to the main CF clinic in your state if you want to be treated properly.  Some states have several clinics.  You need to go to these specialists because they will treat you most aggressively than a regular physician.  They also will treat you with the correct drugs.  My daughter has lived in three states and all the doctors do things differently, but you need to trust your own instincts in what makes sense to you.  She is 21 and doing great considering she has one strong gene and one mutation.  She has little lung damage although she was diagnosed when she was about 5 months old.  I know someone that didnt think they had a bad case of it in their lungs and then they died at age 18 because the lungs were never treated properly.  My daughter does all her vest treatments.  That is sooo important.  If you have the disease and dont use your vest then, shame on you.  I know it itches at first but you will build up a tolerance to that.  All the sickly young adults I see in the doctor's office do not use their vests...parents need to force them to if they want to do the right thing.  Thats's the parents job...of course the kids will complain but they will appreciate you so much more when they are older and see how much your encouragement helped them in their later years.   ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

I am 57 years old and was diagnosed with Cystic Fibrosis two years ago. I had absolutely no symptoms until age 48, when I got sinus infections followed by pneumonia (two times each year). My doctors could not figure out what was wrong until my pulmonologist begged me to go to National Jewish Health Center in Denver to see if they could figure out what was wrong. That was two years ago, and the DNA testing said it all.

After years with IBS, sinus issues and bronchitus with no apparent connection - then sudden pancreatitis and total gastric blocks, I was/ am shocked by Diagnosis of CF at age 57.  Just want to share with sufferers:  For chest and lung issues, I was prescribed Cordyceps for the last 35 years (available at health food stores).  It works so well in clearing the chest, I had forgotten about any chest issues when many Docs were trying to diagnose my sudden weight loss and pancreatitis, etc..  I did not mention chest during Doc visits - this added 8 months onto having a diagnosis.

     I am a professional,  well educated, a world traveler, volunteer and speak on wellbeing and health issues publically.   I eat healthy foods and am not supposed to be unwell!  If I had not accidently come across Chinese Doctors in travels with their herbs, like Cordyceps, (which are actually mushrooms now available every where), I would be in far worse shape than I am.  And I smoked too; One GP was convinced my coughing was due to smoking & COPD and virtually wrote off my lifelong gastric distress and sinus issues. 

 The Pulmonary expert dug deeper into tests; determined I don't have COPD after all - and sent me for Cardio Vascular tests; all fine as well.  Months later, I am wasting, cannot absorb nutrients, digest food - on liquid organic diet - now I feel some real chest issues.  Went to 2 renowned Chinese Doctors in NY to discuss alternate health plans: Back on specific Chinese herbs that address lungs and bowels - feel much better!  Chinese and Indian Doctors tend to treat the whole body with many working parts together - if you are still suffering, I suggest you head to health food stores and ask for referrals to very good Chinese Docs.  Try Cordyceps - and keep in mind, not every Doctor or one medicine, even Chinese ones are necessarily the best ones - keep researching until you feel better,  try new smart diet - ( found out November 2011, that wheat actually causes sinus problems; by eliminating it then 1/2 problems are gone.) keep your spirits up

Best Wishes to all - be as positive as possible and enjoy every minute

 

 

Yes, CF is a genetic disease, so you will have had it since birth. However, there are about 2,000 known variations in the mutant gene, and different people have different symptoms and severity. Pre-screening couples and birth screening only started in the 90s or so, so anyone older would not have been tested. Some people have more severe digestive issues, some more respiratory. Some line into their 50s and beyond, and some die very young. In the 1950s, then mean survival age was about 5 years old; now it is upper 30s to low 40s.

Thank you so much for describing your experience. The information you have shared is helpful and I can appreciate how frustrating it has been for you to get a proper diagnosis.

I was diagnosed at 22 but had symptoms of supposed Asthma since birth.

My daughter was born with Cf as are all people with it. You have been fortunate to go as long as you did without complications. CF is a very complicated disease. My precious daughter passed at the age of 29. You should be able to get some kind of medical assistance. My daughter did work for the last 6 years of her life. She so wanted to be "normal". I will be praying for you and I recommend that you check into all help that is available with those who have this complicated disease. I also recommend you have your children and grandchildren tested to see if they are carriers. It is genetic and passed down by both parents.

MY DAUGHTER DONE ALL HER TREATMENTS EVEN USED HER VEST FOUR TIMES A DAY. SHE TOOK EXCELLENT CARE OF HERSELF. HER LUNGS WERE DOING GREAT ALSO UNTIL SHE TOOK THE SWINE AND TYPE A FLU IN 2009. SHE PASSED 5 MONTHS LATER. SOMETIMES IT IS NOT HOW WELL YOU TAKE CARE OF YOUR SELF. CF IS VERY AGGRESSIVE AND WHEN IT STARTS PROGRESSING IT DOES SO RAPIDLY.

Use Marijuana I have asthma and I am getting tested for CF this year....Marijuana controls all my attacks and lung pain. Research CBD oil and CF....