(7 slie Tiorosis is the most common and seriouschronic disease of infancy and childhood. It affectsthe lungs and digestion. Thick, gluey mucus clogsthe lungs and prevents the flow of digestive juicesfrom the pancreas into the small intestine. The childis prey to pneumonia and often suffers from severemalnutrition. In some C/F babies a blocked intestineat birth requires immediate lifesaving surgery.What are the symptoms?Coughing and wheezing, bulky diarrhea, failure of ababy to gain weight despite enormous appetite, sweatwhich is salty to the taste and a "pot belly''-theseare common symptons. The child may appear to haveasthma, bronchitis, celiac disease or an allergy. Knownas "The Great Masquerader,"' C/F presents symptomswhich are often confusing even to doctors.How serious is cystic fibrosis?Extensive lung damage can occur unless treatment isstarted early in life. The pancreas, unable to functionproperly, may become scarred and fibrous. C/F killsmore youngsters than polio in the pre-vaccine era. Itrivals cancer as a cause of death up to age 15.What causes cystic fibrosis?Most medical scientists believe that cystic fibrosisoccurs when a child inherits two genes for the con-dition-one from each parent. This "'double dose" offaulty genes throws the body's chemistry out ofkilter. Ordinarily the parents themselves have onlya single C/F-carrying gene apiece and show no signof the disease. Some of their children, too, may belucky enough to inherit only one C/F gene or noneat all, and thus escape.Is C/F curable?mt Present taere is mo cure for C/E's "built-in" defectof human chemistry, but investigators are trying topinpoint the exact deficiency or error in hopes ofsupplying what the body needs to correct it. Insulinwas discovered as just such a control for diabetes.What can be done NOW to help C/F victims?Happily, if the disease is detected early enough, manychildren can be saved from its gravest consequences.A form of physical therapy called "postural drainage"helps them cough up the choking mucus. Antibioticsreduce lung infection. Aerosol sprays and plastic misttents, in which patients sleep, enable them to breathemore naturally. Special diets including powdered ani-mal pancreas aid digestion. Since cystic fibrosis wasfirst identified as a separate disease in 1938, methodsof treatment have steadily improved so that moreand more children are surviving.How common is cystic fibrosis?More common than originally supposed. One personin 20 is believed to carry the gene for C/F, whichoccurs as a disease in approximately one in every1,000 live births. Conservative estimates place themumber of Americans with cystic Hbresis at 25,000,As the death rate in early childhood continues to de-cline, this total will increase.28What Is Cystic Fibrosis?Is C/F patient care expensive?For most families cystic fibrosis is a staggeringeconomic drain. Costs of drugs, equipment and otheritems needed in the home may run to $1,200 a year.There are other costs which cannot be measured inmoney-the costs of round-the-clock watchfulness andattention by the parents .... of the demanding scheduleof visits to doctors' offices, clinics or C/F C�nters. of strain on family relationships. Problems arisewhen care of the patient absorbs so much of the par-ents' time and energy that brothers and sisters feelleft out. In households with more than one C/F childthe pressures on overworked, worried mothers andfathers are enormous. Yet most parents, operating asa team, manage to meet the challenge with courageand resourcefulness.How do the C/F chapters help?some of 140 C/F chapters throughout the country,formed originally by parents of afflicted children band-ing together, help ease the burden. They work to winrecognition of cystic fibrosis as a community probleminvolving education for homebound youngsters, fin-ancial assistance from state health departments andspecial care by visiting nurses and physical therapists.Also they spread awareness of C/F as a threat toother children in the community as yet undiagnosedand in serious danger if treatment is delayedCooperating with nearby C/F Regional Centers orhospitals, chapters organize equipment pools fromwhich air compressors, mist tents, etc. may be bor-rowed. Many contribute to the establishment andmaintenance of C/F clinics.What is the National Cystic FiborsisResearch Foundation?The National Cystic Fibrosis Research Foundation isa voluntary nonprofit health agency supported by thechapters. In turn it offers the chapters guidance andassistance. The Foundation has established 30 CysticFibrosis Regional Care, Research and Teaching Cent-ers located in medical school teaching hospitals. Itmakes grants to the Centers, paving the way forfurther research grants by the federal government'sNational Institutes of Health.While scientists seek the key to unlock the mysteryof cystic fibrosis, more Regional Centers, more clinicsin areas surrounding the Centers and many smallerlocal diagnostic and treatment facilities are being de-veloped with Foundation aid. Through this farflungnetwork, the most up-to-date information about C/F,the most advanced methods of care are being madewidely available.Physicians and workers in C/F research look towardthe conquest of the disease within ten years. In themeantime, the Foundation plans to create 20 moreRegional Centers and help set up enough related com-munity facilities so that no child with C/F anywherein the land need be deprived of early, accurate diag-nosis and the best treatment Known to medicalscience.ee. ARE merenmemmere weene OTT ger arate ntact