Doctor insights on:
Atypical Cystic Fibrosis Life Expectancy
Depends: Without a full exam and review of medical records and history of infections secondary to CF would be remiss in trying to become an actuarial. Go see a pulmonologist and discuss the options and likely outcomes. ...Read more
Depends...: There is no way to accurately predict how long a person with cystic fibrosis will live, as many different factors affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of cf, while others can have moderate or severe. In 2009, the median predicted age of survival was in the mid-30s. ...Read more
Median is 5.5 yrs: That being said, population statistics can't be applied to individuals. How well the surgery went, the match characteristics, how well oh avoid infection, your fitness prior to transplant, how well you tolerate the transplant regimen, etc all effect your quality of life and longevity. ...Read more
5 to 10 years: 5 year survival after double lung transplant occurs in 80% of people with cf. 10 year survival occurs in 50% of people with CF who have a double lung transplant and therefore is the average life expectancy. Regular medical care to manage episodes of rejection and infection in the transplanted lungs are critical to achieving a good outcome. ...Read more
Can men with atypical cystic fibrosis have children? I have 2 children, I have no symptoms of CF and I am 32 years old. Never tested for CF.
Can u have atypical cystic fibrosis if u have asthma, severe pancreas involvement & CFTR m470v? Report indicates a 2nd gene may be rare or unknown
Maybe: Surprisingly, M470V is a common variation. Studies have shown 50% of the population has this mutation and actually less likely to cause CF. Most individuals with CF and carry M470V have some other hidden etiology that is the cause, rather than M470V. Genetic expression may be variable and so will be the clinical manifestations. Speak with your doc and a geneticist for specific information. ...Read more
Chronic Illness: Progress in management has improved the quality of life for CF patients but it doesn't take away the basic vulnerabilities of the illness. In its worst forms, the illness shuts down production of enzymes that permit digestion of food & creates excessive mucous in the lungs that sets them up for deadly pneumonia & lung scaring. At some point, one of the complications will end their life. ...Read more
Not very close!:
patients with cystic fibrosis have many difficulties due to recurrent infections and many visits to doctors. Things have changed recently with an aggressive treatment approach provided centers with specialty clinics for management of cf., yet it will far from being close to having a life similar to one without cf. Follow the instructions of the team for the best possible quality. ...Read more
Depends on test: Depending on the original test that was performed, it is unlikely that a diagnosis of CF will be made later in life. Most of the testing that is done today is highly accurate. If you are referring to yourself, at age 31, if the diagnosis of CF has not yet been made, and you have been relatively healthy all of your life, I would say it is unlikely you have it. ...Read more
Unknown: If you ask many experts they will tell you statistics based on large populations, when you look at an individual its harder to predict. As long as the person takes good care of their diabetes and takes all the medicines for cystic fibrosis and sees the doctor frequently at any sign of infection then the person can live a very long life. ...Read more
Varies: Not everyone has a similar experience post lung transplant. In general, respiratory symptoms and breathing, overall improve, and people are able to do activities they were not able to do before as easily. Not all respiratory symptoms go away. Various medications are required and close follow up is mandatory. Survival after lung transplantation is ~ 50% at 5 years. ...Read more
As a carrier:
Genetic carrier testing:
more than 10 million americans are symptomless carriers of the defective CF gene. This blood test can help detect carriers, who could pass CF onto their children. To have cystic fibrosis, a child must inherit one copy of the defective CF gene from each parent. ...Read more
Certainly: Cystic Fibrosis (CF) most common life-limiting genetic disorder of Caucasians, affecting approximately 30K people in the US. A, impacting mainly respiratory function. In recent years patients symptoms better controlled by genetic findings and better medications. Emotional & phys. Development depend on severity, time in hospital, complications. Morb. & mort. Factors afect emotional, cognitive behavior. ...Read more
I have family members with cystic fibrosis. Is it possible to start show the symptoms in my 20's?
What are the chances of a child getting cystic fibrosis among the different racial groups in the u.S.?
Acording to the CF foundation: the overall birth prevalence is 1/3700. It can occur in any race, however the greatest incidence is in caucasians of northern european descent, being 1/2500. The other major groups affected are hispanics 1/13500, african americans 1/15000.
More than 10 million of us carry one part of the defective gene, but to have the disease you must have a copy from both parents. ...Read more
No: You are born with cystic fibrosis, you don't "get" it later in life. It may not be diagnosed right away depending on the type and severity of symptoms. For example, a newborn with an intestinal blockage would be picked up quickly, but an older child or even an adult who presented with mostly sinus symptoms might not get diagnosed until later. ...Read more
One gene bad: The cftr gene codes for (has information for your body about) a sodium-chloride transporter on your cell membranes. If you have two bad copies you have cf, if you have one, you are a carrier. As many as 1 in 25 caucasian adults in the us has this mutation. If you are planning on having children, talk to your spouse about genetic counseling, unless your spouse is of Asian or african descent. ...Read more
Cough + sputum: If above applies, kiss him/her on the skin. If you taste salt it might be cf. A simple sweat test will rule it in or out. ...Read more
Unlikely: At age 49, a diagnosis of cystic fibrosis would be very unlikely. That being said, a diagnosis of pulmonary fibrosis, which is different from cf, could be possible, and generally occurs later in life. Pulmonary fibrosis can give the same signs and symptoms as cf. You can experience shortness of breath, cough, fatigue, and weight loss. Smoking is a risk factor. ...Read more
Not Typical: Certain rare conditions can also lead to high sweat chloride levels (the gold standard test for cystic fibrosis). However, these rare conditions (there's a list) will cause the patient to exhibit different symptoms than those consistent with cystic fibrosis, so the sweat chloride test is considered to be reliable in diagnosing CF in conjunction with the patient's history and physical exam. ...Read more
As high as 15%: The sweat chloride test is still the gold standard diagnostic test for cystic fibrosis. The accuracy of this test is highly dependent on the method used and the lab it is performed in. I only trust a result that is performed in a center that is certified by the cystic fibrosis foundation. Some reasons for false positives include: lab error, malnutrition, & eczema. ...Read more