Doctor insights on:
Why Does Cystic Fibrosis Shorten Life Span
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
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
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
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
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
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
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
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
Get tested: Testing for cystic fibrosis starts with a sweat test. If that is abnormal, genetic testing in the blood is used to confirm the diagnosis by finding the specific genetic mutations. In general, people with CF have recurrent pulmonary infections and abdominal discomfort/diarrhea due to fat malabsorption. ...Read more
Cystic fibrosis is a risk factor for:: Aspergillosis, Brain abscess, Bronchiectasis, Collapsed lung, Hypertriglyceridemia, Pulmonary Aspergillosis, Sinusitis, Mucocele, Sputum, Phlegm, Rectal prolapse, Acute sinusitis, Vitamin A deficiency, Vitamin K deficiency, Vitamin E deficiency, Vitamin D deficiency. ...Read more
CF and environment: Depending on the severity of your cf, leading an active healthy lifestyle outside is not a fantasy. Common sense will dictate avoidance germs by simple hand hygiene (wash, wipe, alcohol base hand gels). Knowing your CF treatment plan as per your pulmonologist/specialist is important for slowing down the progression/maintaining a more resilient defense against bacterial/chronic lung infection. ...Read more
About 1 in 25: The likelihood of being a carrier for CF depends on your ethnic background. Among whites it is about 1 in 25 or 30 and in hispanics 1 in 45 or so. It is lower in african americans and asians. If there is a known person in your family with CF that will increase the risk of being a carrier. CF was only known as a disease in 1938, so before that babies died of pneumonia or diarrhea, not cf. ...Read more
Genetic disorder: Cystic fibrosis is a genetic disorder involving lungs & digestive tract, causing recurrent lung infections due to thick inspissated mucus & poor growth in majority of patients due to malabsorption. Treatment involves inhaled respiratory therapies to prevent lung disease & pancreatic enzymes to enable absorption of nutrients. Average life expectancy is near 40 years, new therapies being developed. ...Read more
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