Has anyone been diagnosed post 30 years old??

[Ternaya Jeffrey-Nielsen]

Hi
I'm new here... Recently it has been suggested that my son (7 months) be tested for Cystic Fibrosis as he has had recurring bronchiolitis since birth... I've done a little bit of reading and am wondering if my fiancé may have CF misdiagnosed as chronic asthma... He is 32... His symptoms are...

- Bad lung infections/pneumonia from childhood requiring hospitalisation and once had a collapsed lung
- Frequent bowel problems (diarrhoea etc)
- Frequent chest infections
- Frequently bringing up yellow mucus
- Always tired/lethargic
- Clubbing in fingers
- Always coughing
- Very thin (but tall) he cannot seem to gain weight...

I always thought it was just as he smokes (only a few a day but still GRRRR) but now I'm thinking otherwise... Has anyone else potentially been misdiagnosed as asthmatic and been re-diagnosed later on??

 

[m.coteklein]

Hey!,

First, congratulations on the new one! I'm sorry to hear they're suggesting him to get testing...never easy. So, to answer a few of your questions, 1.) has anyone in your family you have known of had CF? I ask this because CF is a genetic disorder in which both parents have to be a carrier of a mutation on the CFTR gene (there are many at that too). 2.) your husbands symptoms look a little worrisome: CF is a progressive disease, that means there is a whole spectrum of disease variability: some people may experience mild disease and symptoms for years, while others' experience severe disease merely a few days after being born (this spectrum is largely dependent on the type of CFTR mutation combination) . Either way, things progress and can change very rapidly. I would talk to your husband and have him get checked out by a doctor and have him explain his symptoms. There are a few basic test that one can do like a Sweat Test and a Stool Sample. Usually, people who discover they have CF later in life have mild disease (at the time being) and are usually Pancreatic Sufficient and can have normal salt and chloride readings (pass the Sweat Test). If both these tests come back negative, one can get a genetic test (these are more expensive, but are pretty much always accurate (seldom are they not)) which will show if there is a CF causing mutation in the CFTR gene. It's very stereotypical to be originally diagnosed as having severe asthma for those that are diagnosed later in life. Hope this helps!

 

[Beccamom]

Congrats on the baby. Make sure a sweat test is done at an accredited hospital. To check accreditation go to www.cff.org.

Yes, I was diagnosed at 35 and now I'm 37. I was diagnosed because my daughters were being tested due to their chronic asthma not be helped by asthma medicine among other reason. We found out they were each carriers of different CF mutations. Myndoctornput it together and tested me. Sure enough I had both mutations. The good news is I've been treated for 1 1/2 years now and feel so much better. In the summer without cold and flu season I fealt incredibly good. Now in the winter I feel crappy at times, but for the first time every i have kicked a cold without it becoming a major sinus infection and/or bronchitis or pneumonia. My quality of life has majorly improved.

 

[Printer]

Lots of us out here were dx after age 30. He should be tested. The world is full of Doctors who can't spell CF much less Dx it. He needs to go to an Approved CF Clinic and see a CF Specialist.

Bill

 

[MichaelL]

I was diagnosed at 34. As described above, I have a more mild case and am pancreatic sufficient. The sweat tests suggest that I do not have CF, but my case was confirmed with a DNA test. His symptoms sound like standard CF symptoms. I agree with the comments above that he should get tested. Assuming he has CF, proper treatment could improve his health and slow down progression of the disease.

 

[Simba15]

I was dx at age 50

 

[BreeAlysia]

I was diagnosed at age 32. My sweat test was normal though. They only found my CF through a genetic test. I had chronic lung infections that lead to bronchiectasis. I am also a more mild case with no real pancreatic problems. I was never misdaignosed with asthma, but my doctors never really looked into why I was getting so many infections or why someone my age already had bronchiectasis. Also, many people told me it was impossible I had CF. But I do, so I am glad my current pulmonologist was so diligent in finding the root cause of my lung issues.

 

[stephen]

I was diagnosed at 63!

Previously, my respiratory and sinus problems had been attributed to Primary ciliary dyskinesia (PCD), also known as immotile ciliary syndrome. After seeing close to a dozen specialists in various fields in the New York area, my pulmonologist suggested a visit to National Jewish in Denver. They diagnosed my CF using comprehensive CFTR mutation screening.

 

[Ternaya Jeffrey-Nielsen]

Thanks everyone!! I will definitely be pushing for hubby to get tested, especially as our little man is being tested... I'm not sure about his family as his mum doesn't really know much about her family... Mine have got lung problems but no definite CF as far as I know...

 

[suziesmom]

My daughter was diagnosed at 11 years old. I told her doctor that I wanted an allergist to see her. He said it was'nt necessary but he gave me the referral. Before that, he continuously told me to give her Robitussin DM, and that it was nothing but allergies. I took her in to the allergist. He said he was going to do a sweat test along with numerous other tests. He told me not to worry, the sweat test was routine but he could tell "just by looking at her" that she did not have CF. By the way, I know that CF tends to run in families. However no one in my husband's or my family has had it. The doctor called me sounding as if he could not believe it............. she had CF.

 

[rtorres25]

I was 38! I'm now 48. Chronic lung problems all my life. I was told Asthma/allergy. Tested positive on Sweat Chloride test at age 22, but I was told the numbers weren't valid for adults. Tested again at 38 and started treatments. Quality of life is a hundred times better now! I'd say get your fiancé tested. It can't hurt. Good luck

 

[welshwitch]

Thanks for sharing your stories, everyone. Amazing the spectrum that CF is. Keep fighting.

 

[JustaCFmom]

I have a 22 year old son with CF and the only reason he got diagnosed is because his younger sister had a competent doctor who sent her for screening. Our family doctor was shocked we were doing a sweat test for the 15 year old,who never had any previous history of lung issues. ("Why are you doing that test?! That's for Cystic Fibrosis!") She just started coughing when she was 14 and none of the asthma medications that were prescribed throughout the year helped her. (Actually, a simple sputum culture would have revealed her Staph infection. Go figure why no one does that!)

He had a period of time where he was coughing quite a bit and he went to a pulmonologist. The doctor didn't find anything wrong and in the meantime my son got into running. The running (and subsequent cycling) have saved him. His lungs are doing well. The diagnosis means he gets top medical care, avoids people who smoke or have flu, and doesn't neglect any colds he may catch.

Please pursue the testing. The symptoms are worrisome and if he does have CF, he will feel SO MUCH better with the proper treatment!