Sandy's Cystic Fibrosis Page

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Hi, My name is Sandy. I am 29 years old and I was born with a genetic disease called Cystic Fibrosis, (CF for short). A lot of people have never heard of CF before, and that is why I wanted to make a web site where they could learn almost all about it.

Cystic Fibrosis is a chronic, progressive, genetic illness which causes many problems involving mainly the lungs & digestive system. The basic problem with CF is due to an abnormality of the exocrine glands, namely the sweat and mucus glands. The mucus of CF patients is extremely thick and because of its thick and viscous structure, it gets trapped in the lungs and intestines and eventually causes scar tissue to form in the lungs. This scar tissue eventually leads to irreversable lung damage. Other conditions resulting from this thick mucus are malnutrition, poor growth, frequent respiratory infections, breathing difficulties, and sinusitis. There are approximately 35,000 Americans, 20,000 Europeans, 3,000 Canadians, and many Latin and Central Americans who live with CF. It is most common in caucasians whose ancestors came from northern Europe, however it affects all races and ethnic groups. It is less common in African Americans, Asian Americans, and Native Americans. Approximately 2,500 babies are born with CF each year in the U.S. About 1 in every 20 Americans is an unaffected carrier of an abnormal "CF gene." Many of these carriers are unaware that they have this gene.*

Cystic Fibrosis is often fatal, however there are many new and innovative treatments around for CF today, and life expectancy can be as much as 60 years old and beyond. There is currently no cure for CF but researchers are coming closer each day. The most important thing to realize is that every person with CF has their own unique and individual case. Some have more severe cases than others and some have different variations of symptoms. No doctor can put a time limit on a CF patients life. It isn't possible to know how long someone will survive with this disease. With the right care and attitude, we can live well beyond our "expected" years.

One way of prolonging the life of a person with CF is to perform a lung transplant. I am currenly on the waiting list for a lung transplant at UCSF Medical Center. The wait for a new pair of lungs can be as many as two years or longer. Organs are in short supply. Luckily my doctors do not anticipate me needing new lungs very soon, but many MANY children and adults with CF die every day waiting for an organ. In the United States, there are about 3,000 people waiting for a lung transplant at any given time. About 850 of them will get one, according to statistics from the United Network for Organ Sharing, which manages the U.S. transplant waiting list. In 1999, 591 people died on the waiting list. Transplant societies around the world say there are nowhere near enough donated organs to meet the need. Current estimates indicate that of the 20,000 or so Americans who die each year under circumstances that make their organs suitable for transplant, only about 3,000 agree to donate them. That is why it is so important for people to become organ donors. Please become an organ donor today and make sure your family is aware of your wishes.
Click here for information on how to do so.

*Information obtained from the National Heart, Lung, and Blood Institute (NHLBI).

Symptoms of CF vary but here are the most common: