Cystic Fibrosis (CF)
If you have received a prenatal test result for your child, we are here to support you. Our services are free. Talk with one of our trained consultants to determine if parent care coordination would be helpful for you.
Description
Cystic Fibrosis (CF) is a genetic disease in humans possessing two copies of a defective cystic fibrosis transmembrane conductance regulator (CFTR) gene. The CFTR protein is unable to attract water to the surface of cells, causing mucus in the body’s organs to thicken. The thick mucus causes various complications in the lungs, pancreas, and liver, which can lead to lung infection, malnutrition, and liver disease. Cystic Fibrosis occurs in 1 in 3,200 live births.
Screening and Diagnosis
Cystic Fibrosis is diagnosed with a genetic test (newborn screening or a targeted test), a sweat test, and a clinical evaluation. Because CF is an inherited condition, if neither parent has CF but both parents are carriers of a defective CFTR gene, their child has a 25 percent chance of CF. If one parent has CF and one parent is a carrier of CF, their child has a 50 percent chance of having the condition. Over 1,200 mutations have been identified in the CFTR gene associated with CF.
Treatment/Prognosis
Although there is no cure for Cystic Fibrosis, people with CF can live long enough to start a family and pursue a career due to advancements in CF treatments. Current therapies for CF depend on the needs of the individual child and may include airway clearance, inhaled medications, pancreatic enzyme supplements, a fitness plan, and CFTR protein modulator medications. The literature reporting on cystic fibrosis patients’ perceptions of the meaning of life reveals that most people with cystic fibrosis have a sense of purpose and are satisfied with their lives.
Medical advances are continually improving treatment options and outcomes so consulting with specialists and major children’s hospitals may be beneficial to finding the best possible care.
Below are additional support resources that may be helpful.
Sources:
https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
www.cff.org
Cystic fibrosis - Diagnosis and treatment - Mayo Clinic
Patient’s perception of the meaning of life in cystic fibrosis – its evalua (phmd.pl)
Diagnosis-Specific Support
Claire’s Place Foundation provides heart-felt assistance to the families of children and to individuals diagnosed with cystic fibrosis. We work to heighten awareness and we provide education, skills, financial and emotional support.
Cystic Fibrosis Family Connection (CFFC) is a charitable, not-for-profit corporation established to assist cystic fibrosis patients and their families. CFFC was founded as an umbrella for a variety of activities to help CF patients and their families cope with the challenges of this disease.CFFC supplements the services provided by other organizations. For example, the Cystic Fibrosis Foundation, a national organization, funds research into the treatment and, hopefully, cure for cystic fibrosis. Medical care is provided by the staffs of the pediatric and adult CF centers in conjunction with the family’s physician.The founders of CFFC sought to fill a gap by providing support with the non-medical aspects of living with the disease. CFFC programs facilitate the exchange of information among the CF community, provide financial assistance for costs not covered by insurance and increase public awareness about CF.
Since our founding in 1955, we have worked alongside the cystic fibrosis community to effectively transform a genetic disease in a single generation — making CF one of the most amazing stories in medicine today
Facebook Groups:
PrenatalDiagnosis.org wants to provide you with a wide range of support including links to helpful Facebook groups. However, we cannot verify the exact content that you will find on Facebook pages and groups, which vary widely by moderator, participants, and topics.
This is an open group for people with CF, people with family members who have CF, or doctors who treat it.
A safe place in the CF Community to chat, find answers, and find support.
Learn more about Cystic Fibrosis, ask questions that you can hopefully have answered by one of our members, share experiences and learn from others, and get more awareness and support for those suffering with Cystic Fibrosis alongside friends and family