Living with Cystic Fibrosis

Cystic fibrosis is an incurable genetic disorder, which is characterized by the clogging of the lungs due to thick mucus. It is commonly known as CF, mucovoidosis or mucoviscidosis. It affects the glands in charge of mucus production such as the pancreas, liver and lungs. The disease can cause a progressive disability because of its multisystem failure. It is listed as one of the most life-shortening diseases in the world. Symptoms include difficulty in breathing, salty-tasting skin, lack of growth, and zero weight gain. It can also cause sterility in both men and women. This deadly disease is caused by an irregularity in the cystic fibrosis transmembrane conductane regulator (CFTR) found in the genes. There is no proven cure and sufferers have short life expectancy due to lung failure.

Living with cystic fibrosis could be extremely hard especially for children, but life must still go on. Ryan, 31 was diagnosed with the disease at age 5. He has described his life with CF in detail on his website. He says that he has to have aerosols everyday as he has difficulty breathing; because of this, he often gets nosebleeds. His body has to be in a slanting position to get the mucous in his lungs to unclog. Ryan describes that CF sufferers should also have continuous medical assistance provided by doctors, nurses and respiratory therapists. He states that IVs, hospitalization and a lot of pills are a part of his normal childhood life. He says that he has learned to swallow pills without protest. Because of his strong will to survive, he has lesser attacks now and has a happy home with his wife and baby son.

Kate, who is 29, is also a proud survivor of the dreaded disease. She describes how she used to take 50 pills each day and usually got chronic chest pains. She says that inhalers have to be used to help her breathe. CF has also taught her never to leave her hair wet as dampness can cause mucus production. For her medication, inhalers and intravenous drugs are used to clear away the mucus. Annual flu shots are a must, she writes, and check-ups must be done every 3 months.

Lifestyle Measures:

1. Follow a healthy lifestyle.
2. Impose tender care of one's self.
3. Stay away from smoke.
4. Wash hands regularly.
5. Drinks lots of water and fruit juices.
6. Exercise frequently.
7. Get a chest physical therapy.

Like other serious diseases, early detection could help extend the projected short lifespan. Mothers should have their babies tested through newborn screening, sweat testing and genetic testing.

Family and friends play a central role in the lives of people with CF. Because of the rigors of the disease, patients often feel anxiety and depression. It is crucial to have someone there to talk to them and share their feelings. Support groups are available to deal with the situation.

CF sufferers need the tremendous support of loved ones to help them fight this disease head on.