HELP! Cystic Fibrosis?

My boyfriend just found out that he had cystic fibrosis, and they said he has untill he hits twenty before he needs to worry about dieing. Is that really how long he has to live? With out meds?
If anyone could give me any information at all, about anything, please speak up!

I love people who say that because he is in his teens or whatever that he does NOT have cystic fibrosis. It wasn't a routine check when we were babies so there are a ton of people in there teens, 20's 30's even 40s. that are being diagnosed. There are also THOUSANDS of different strains of cystic fibrosis so for him to be as old as he is and being diagnosed its not too supriseing. Now if the doctors are saying He does need the routine CF drugs breathing treatments, puffers antibiotics then he will do pretty well as long as he does his meds which are hard to get into that habit now after so long of not doing them. However if he does NOT do the nessessary treatments the doctors are prescribing then YES he could be looking at dying in his 20's. But those are extreme cases too. Mostly if he does what meds they are saying he should do. He will have a very long life. Statistics are saying the average life span for CF is living to 37 but with all the medical advances by the time he hits 37 the age will change. He doesn't need to worry about dying. He just needs to do his meds and live life to the fullest. For CF help though go to CFF.org and CFRI.org. Also if you have MYspace there are a ton of CF groups for support and such.

He more then likely does not have this. If he did without any medications up until this point he would be dead by now. He needs to get a second opinion. You are diagnosed with it at birth. Not as a teen or adult.

Late diagnosis is unusual. How old is he?


There are many treatments being developed for cystic fibrosis, but are not yet available for general use.

Checkout the link below for potential treatments for this disease.
Gene therapy, and protein assist/repair look like the most interesting near term therapies. Gene therapy and protein repair appear prommising to treat the respiratory problems, but may be years away. However, other organ systems are involved.

-----SNIP----
CF is caused by defects in the gene for cystic fibrosis transmembrane conductance regulator (CFTR), which encodes for a protein that functions as a chloride channel and is regulated by cyclic adenosine monophosphate (cAMP).
CF is a disease of exocrine gland function, involving multiple organ systems and chiefly resulting in chronic respiratory infections, pancreatic enzyme insufficiency, and associated complications in untreated patients.

Prognosis in patients with CF has improved over the last few decades, but CF remains a life-limiting disease, and a cure for the disease remains elusive.
Median survival age is 36.8 years.

Age: Median age at diagnosis is 6-8 months. CF is diagnosed in two thirds of patients by 1 year of age.

-----SNIP----

I know people that are over 60 with Cystic Fibrosis. It's a mix of how it's going and how you can deal with the pain.

They may have just made that comment in a certain way to try to indicate he is just like everyone else. But it may have been taken a different way.

I hope this isn't a way to dump you or move away, there are horrible people that pull this.

How is his current condition?

Amen to the answer above me! I love how people say there's NO way possible that he could have CF because you are only diagnosed as a baby and doctors would KNOW if you had CF... yeah yeah...

There are many cases of late diagnosis CF due to different circumstances. YES, the majority of patients are diagnosed in infancy or childhood but by no means are all of them diagnosed. Different genetic mutations cause different symptoms and even beyond that, sometimes, the same genetic mutation can cause different severities in the illness. And, if you even want to go a step beyond that, there is recent research that shows influence from genetic modifiers which can impact the severity of the disease. Bottom line, when it comes to CF, no one- not even the best of the best doctor can tell you when you'll die or how severe your symptoms will be.

I wish you the best of luck and your boyfriend the best of health. Don't give up. Ever.


Don't lose faith and accept a doctor's opinion that he'll die when he's 20. They don't always know that. I can say that they do know what medications he needs, can determine the extent of the damage to his lungs and his other organs and can find out which mutation of the disease he is affected by. All of these things will help him live longer and stronger and will help them treat him more appropriately. I can't imagine any doctor recommending that he does not use any form or medication or therapy if they have a certain diagnosis of Cystic Fibrosis. It's all about prevention with this one. The sooner you can stop and then prevent further damage, the better your chances.

I would suggest that, if he is under 18, he consult with the pulmonary department at his local Children's Hospital. They are fantastic. If he is over 18, he will need to see an adult pulmonologist at National Jewish or another Respiratory focused hospital. I would search your area for the nearest CF Center- you can use CFF.org to do this. Or, you can ask your regular doctor for a referral, but based on his initial response (telling him that he will die when he's 20 and doesn't need medication), I wouldn't necessarily trust his expertise in this situation.

10-15% of people with CF are diagnosed after the age of 8. My son was not diagnosed until he was 7. There are several excellent web sites where you can read about cystic fibrosis. The most important thing you can do is learn a little about his treatments and be supportive. He needs to follow his treatment routine or his health may decline slightly each year. There are many people who live to their 60 and 70's with CF.

First take a breath. One of the first things my daughters doctors told us was "don't believe everything you read and hear about CF". Every CF'er is different. My daughter was diagnoised at 2 weeks and is 13 now and extremely healthy and takes no meds. The treatments that are available now extend life and improve quality of life tremendously. You and your boyfriend need to listen to his doctors and follow their instructions. Staying physically active is extremely important. My daughter is a long distance swimmer and runner, I am convinced this is why her lung functions stay so good. She eats all of the time but isn't fat or skinny. She takes vitamins to balance what she loses to malabsorption. So again take a breath and stay calm, tell your boyfriend to excercise and eat healthy and listen to his Docs. Best of luck.

I will share the following with you...

Being an Respiratory Therapist, I get to see some of these CF cases from time to time...

The one that affected me was the daughter of some doctor friends...These parents, who I knew fairly well, were doctors [GPs] and thier CF daughter was a GP doctor.

They did a lot of research, and they knew that the average life span of a CFer, was late 20s [at the time, this was 10 years ago]. She had done a lot of reading and looking over various publications and managed to live until 36 years of age, when I saw her, and placed her on a ventilator [mechanical device to control breathing]...she lived a couple of days and her parents took her off when thier daughter was not improving and was getting much much worse.

When is CF diagnosed? Mostly when infants...Does that mean that there are not later diagnosis...idon'tknow...
But for any person who has lived beyond 37 years of age, I sure would like to know, and would like to know how they did it...and what thier lifestyle is....'cause I would like to pass that information on to some other CFers.....