New parents who have cystic fibrosis say it is important to be prepared and organized so you can manage the demands of parenthood and your own cystic fibrosis care. Your partner, family and friends, and community may be sources of support to help care for your child and keep your treatment on track. Some new parents even say that their children learn to help with cystic fibrosis treatments.
Having a low income is linked with worse lung function, higher death rates, and poorer nutritional status for people with cystic fibrosis. This is true even when comparing groups that have the same number of healthcare visits and take long-term prescription medicines. Also, people of color are more likely to be diagnosed later or not diagnosed at all, because many assume that cystic fibrosis affects only white people.
If you are a carrier, you may have some mild cystic fibrosis symptoms. Talk with your healthcare provider about ways to lower your risk of complications. Your provider may recommend extra screening tests for colorectal cancer. Limiting the amount of alcohol you drink may lower your risk of pancreatitis.
It can be dangerous for people with cystic fibrosis who have had a lung or liver transplant to receive certain vaccines. Your healthcare provider can advise you about vaccines.
You’re the expert in managing this condition day to day. Talk with your providers to make sure treatment plans reflect your personal needs and goals that will help you live a longer and healthier life.
As they grow more independent, it is imperative for adolescents and teens with the condition to know how to take charge of their own health care, manage their own appointments, and take their medicines and other treatments exactly as prescribed by their healthcare providers. Not following treatment recommendations can lead to serious illness and hospital stays.
Because newborn screening varies from state to state, it is important to talk to your baby’s healthcare provider if the test result is inconclusive (uncertain) or if you suspect your baby may have cystic fibrosis based on other symptoms.
Many people believe that only people who are white get cystic fibrosis. But the disease can occur in anyone and sometimes gets missed in people who are Black or Hispanic or have Asian ancestry, including from China, India, Indonesia, Iran, Japan, Korea, Pakistan, and Vietnam.