Cindy Riley on how to get a better understanding of Cystic Fibrosis

[Cindy Riley]

Cystic Fibrosis (CF) is a life-shorting, inherited disorder that affects the way in which salt and water moves into and out of the body's cells. The most important effects of this problem are in the lungs and the digestive system (especially the pancreas), where thick mucus blocks the small tubes and ducts. The lung problem can lead to progressive blockage, infection, and lung damage, while the pancreatic blockage causes poor digestion and poor absorption of food, leading to poor growth and under-nutrition. The sweat glands are also affected, in that they make a much saltier sweat than normal. Anyone has probably heard about the sweat test used to diagnose CF. Most parts of the body that makes mucus are also affected, including the reproductive tract in men and women with CF.

Cystic Fibrosis is an inherited disorder that is present from birth, although signs and symptoms of it may not show up for weeks, months, or even years after birth. Although it is inherited, the parents of a child with CF do not have CF, and most often there is no history of it in the family. We all have two CF gens that determine whether or not we have CF. Both of these CF genes need to be abnormal for us to have CF, and CF is inherited by receiving one abnormal CF gene from each parent. Each parent usually has only one abnormal CF gene, and thus has no sign of CF at all. Cystic Fibrosis is very common among white people, and is the most commonly inherited profoundly life-shorting disease, affecting 1 in every 2500 live babies born. One in 25 people carry a mutation of the CF gene. CF is not caused by anything the parents did ----- or did not do ---- during the pregnancy. You cannot "catch" CF:, it is not contagious.

There are several important factors that explain the tremendous improvement, and that explain why the outlook continues to improve almost year by year. First CF is a newly recognized disease. (It is not a new disease, but is a newly recognized disease.) It was not until 1938 that Dr.Dorothy Andersen wrote the first medical paper describing a number of children who had died with digestive problems and lung problems. She was the first to recognize that this was not just a coincidence, but represented a single disease, which she called "cystic fibrosis of the pancreas," because the children she examined after they died all had cysts ( fluid-filled sacs) and scar tissue (fibrosis) replacing almost all the normal tissue of their pancreas. The name has been shorted to Cystic Fibrosis.

In the last 40 years, many new antibiotics have become available, making treatment more affective.The point here is that the medical world has good comprehensive treatment programs for patients with CF for only a little more then 40 years.

Certainly, while an average survival to age of 32 years reflects a tremendous improvement, it is not something to be satisfied with; but this situation is continually improving.

The situation is similar to that of diabetes. It is know that people get sick with diabetes because they don't have enough insulin to control their blood sugar. These people can lead normal lives by taking daily insulin shots, but they still have diabetes and will have it until scientists discover and eliminate the cause of inadequate insulin production.

Although it is impossible to predict when medical research will provide the answers needed to "control" CF, the CF Foundation approaches the future with an increasing sense of optimism, challenge, and vigor. The steadfast support for research efforts to understand CF and to develop therapies will further improve the lives of individuals with CF.This strategy will continue to stimulate innovative research and to involve outstanding scientists in the expanding realm of CF science.

I have prayed daily that the scientists come up with a break through and continue doing so for my Grandson.

Cindy Riley

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