I am the doctor for your hospital and have prepared the following paper for you to look at and possibly use. It includes information on what cystic fibrosis really is, what treatments there are, what you two can do for your child, and how it is inherited. I hope this document is useful to you in your incoming struggle against this horrible disease.
It is good to know that you are not alone. Every day four children in the United States are diagnosed as having cystic fibrosis. Cystic Fibrosis is the most common inherited disease among Caucasian. Approximately one out of every two thousand Caucasian babies is born with it. I am sorry that this news has to be bad, but it is important that you have all the information you can. Of the four thousand diseases that are known to be inherited from our parents, cystic fibrosis is the number-one killer. Each day three people die from it. Despite this bad news, CF is no longer the nearly automatic death sentence it used to be. Improved treatments are allowing more than half of the people with CF to live into their mid-twenties, and some are already in their forties, fifties, and even sixties. It will be very important for you t frequently check with doctors for new medical advancements. More and More discoveries are made every day and one of them very well might be able to help you situation.
You cannot catch cystic fibrosis from someone who has it. It is not a contagious disease, cut a hereditary or inherited one. A child but be born with it to have the disease. The symptoms usually begin at an early age, but they last throughout an entire lifetime.
The problems in CF start with thick, sticky mucus in the lungs and digestive systems. This mucus replaces healthy tissue with fibrous scars and fluid-filed cavities called cysts. Mucus builds up and clogs the breathing passages and the pancreas, an organ that produces digestive juices. These clogs lead to frequent lung infections and digestive problems. Over time the continual infections may cause the lungs and heart to weaken, until they are no longer able to function properly ending in death.
Mucus is normal in lungs. It helps to protect the lung and air passages by removing germs and dust. Normally mucus s thin and slippery, but when a person has CF, the mucus-producing cells absorb too much water. The excess water makes the mucus thick and sticky and this can plug up ducts and passageways. When a mucus plug forms in the pancreas or liver, it blocks the flow of digestive enzymes to the intestine. Then the enzymes are not able to do their job, and food is not digested properly. In addition, the mucous plugs cause enzyme-producing cells to be destroyed and replaced by scar tissue, which makes even less enzymes available for digestion.
Since your child is a mal, there are some specific consequences he will face later in life. In males, mucous plugs stop up ducts leading out of the testes and prevent sperm from passing through. These are the same ducts that are cut in a vasectomy, to make a man sterile. As a result, most adult males with cystic fibrosis are unable to father children.
As I am sure you were, most parents are quite surprised when their child is diagnosed with cystic fibrosis. The way they find out I by recognizing common cystic fibrosis symptoms such as:
failure to gain weight
large amounts of mucus
frequent and foul-smelling bowel movements
enlargement of fingertips and toes ("clubbing")
small growth inside the nose
The reason this disease is usually not caught right away is because these symptoms are very common to other childhood ailments. Also, symptoms may be very mild during the early years. Your case follows this since your son is five years old.
Almost everyone with cystic fibrosis will eventually suffer from lung disease. Respiratory problems are the most serious symptoms of cystic fibrosis. How well a person with CF can get along and how long he will live depends mainly on how serious