Tag Archive | "cystic fibrosis patient"

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What Causes Cystic Fibrosis?



The Cystic Fibrosis Foundation estimates there are over 30,000 Americans with cystic fibrosis. This disease affects mostly Caucasians whose ancestors came from northern Europe. It does affect all racial and ethnic groups but white Caucasians are more at risk for developing or being a carrier of the defective gene that carries cystic fibrosis. The average lifespan for a patient diagnosed with cystic fibrosis is 30 years. New technology and scientific advances are making life better and improving predictions of life spans for cystic fibrosis patients.

Cystic fibrosis has these signs and symptoms but will be different for each individual patient. Patients with cystic fibrosis are often diagnosed before the age of three but diagnoses have been given to teens and adults also. One of the symptoms of cystic fibrosis is a delay in the onset of puberty. Your teen may experience frequent stomach pain, excessive gas, and be late in entering puberty. Other signs and symptoms of cystic fibrosis are excessive and thick mucus in the lungs, chronic cough that brings up discolored mucus and possibly blood. Frequent upper respiratory infections, bronchitis, asthma, and wheezing may point to a problem with cystic fibrosis.

Another unusual symptom of cystic fibrosis is nasal polyps. These are fleshy growths found inside the nasal cavity. Severe attacks of sinusitis can be an another sign of this devastating disease. Fatigue is a part of having cystic fibrosis and weight loss, or abnormal growth patterns even if the patient is eating a regular and healthy diet. This is called failure to thrive and a doctor should see a child who displays this symptom. If you kiss your baby or toddler and their skin has a salty taste, take them to the doctor for an evaluation. Newborn babies who are unable to pass stools, have colic symptoms, and have excessive gas should also be seen by a health care professional.

Cystic fibrosis is an inherited disease of the glands that produce sweat and mucus. It is often found in the digestive, reproductive, and respiratory system. You can only get this disease if you have parents that each has a mutant abnormal gene. If only one parent has this abnormal gene, you will probably be a carrier but not exhibit any of the diseases symptoms. The gene that is affected is a gene that produces a protein that moves chloride through the cell membranes. This is a part of sodium chloride or just simple table salt. If this cell is abnormal, the flow of chloride ions and water become blocked because there is a secretion of abnormally thick mucus. This sticky substance sticks to the walls of the passageways to the respiratory, reproductive, and digestive organs blocking them from receiving the important nutrients they need. It can affect the pancreas, liver, colon, urinary track and lungs. A baby born with the abnormal cystic fibrosis gene usually will show symptoms within their first year. Sometimes symptoms will not begin to appear until the child reaches the age of puberty.

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What Are Your Options for Treating Cystic Fibrosis?


The first information anyone wants to know when he or she are diagnosed with a serious disease is; what can we do to treat it? There is no known cure for cystic fibrosis at this time. Treatment options are for prolonging life and improving the quality of life for patients. Advances are being made every year and the life expectancy of cystic fibrosis patients has risen from the age of 16 to the late 30s. That is a huge improvement since the disease was first diagnosed in the 1940s. Symptoms and severity of the disease will vary from patient to patient. Each patient may have different parts of his or her body affected by the disease. Cystic fibrosis affects the pulmonary organs, digestive tract, and reproductive system. Other little known signs of cystic fibrosis are blood disorders, bone and joint problems, and osteoporosis.

Treatments will vary from patient to patient depending on which part of their body is being affected by the disease. Treatments will be tailored to fit each patient. Some patients will have more severe symptoms than others, so each treatment will need to be individualized. There are a wide variety of treatments and medications that can be used depending on the severity, the stage of the disease, and how fast it is progressing. The general goals of any treatment are to ensure the patient is receiving the right amounts of calories and nutrients and to increase the airflow to the lungs. Treatment is needed for prevention and treatment of lung infections and to decrease the amount and thickness of the mucus in the lungs.

Patients with cystic fibrosis may want to look for a CF treatment center near your city. There are over 115 CF centers scattered throughout the United States. These centers specialize in treating and diagnosing cystic fibrosis. Treatment at these centers will include instructions on diet and nutrition, physical therapy, and medications that will ease the symptoms of cystic fibrosis.

Often patients with CF are undernourished and fail to thrive because the disease is blocking the essential nutrients from getting into the digestive tract. Growth is slow and children are smaller and fail to gain the weight that others of that age do. Children and adults should increase their caloric intake by at least 120%. They should also increase the protein in their diet. If you are a CF patient and worried you are not getting the proper nutrients, there are several nutrient supplements on the market in pleasant tasting shake forms.

Each cystic fibrosis patient should do exercise as their body can tolerate it. Physical exercise will help keep the thickened mucus from building up in the body. It also allows the mucus to be removed much easier. Physical exercise can also expand the lung capacity and give the body more air to work with. Not every cystic fibrosis patient may be able to do physical exercise. You should always check with your doctor before starting on any new diet or exercise routine.

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Treatment Choices for Cystic Fibrosis


Cystic fibrosis has no known cure. There are treatment choices to help ease the symptoms of the disease and give the cystic fibrosis patient a better quality of life. There is no way to prevent cystic fibrosis. It is a genetic disease caused by an abnormal, mutant gene. Chromosome number seven is the specific gene that mutates and holds the cystic fibrosis gene. A person can only get the disease if both parents have the abnormal gene in their system. If only one parent has the abnormal gene, the child can be a carrier but not show any signs of the disease. Preventing the disease is not currently possible.

If we cannot prevent cystic fibrosis then we must learn more about the disease and find new ways of treating the illness. In todays world the disease can only be slowed and the cystic fibrosis patient can be given a better quality of life. Cystic fibrosis often causes frequent lung and upper respiratory problems caused by obstructed breathing passages. The basic parts of treatment for cystic fibrosis are physical therapy, proper diet and exercise, and medications for reducing the mucus that blocks the passageways.

There are medications that can ease the discomfort of cystic fibrosis and many are in the form of an aerosolized mist that can be inhaled. One treatment includes using bronchodilators, which are used to widen the bronchial tubes associated with the lungs. Mucolytics that are used to thin the mucus, and decongestants that are used to help reduce swelling in the membranes in the breathing tubes. Antibiotics are often used to fight lung infections and an enzyme is administered to help think the mucus that is sticking to the passageways. This mucus often is a breeding ground for bacteria and infection.

If the digestive organs are affected by cystic fibrosis the patient can be given pancreatic enzymes, which will help the digestive system. Enemas can be used to treat blockages in the intestines caused by cystic fibrosis. Patients who experience severe symptoms and complications of cystic fibrosis may require surgery and other more drastic therapy. A patient who is having respiratory failure may need a heart-lung transplant to prolong their life. Patients with cystic fibrosis who experience gastrointestinal problems may need surgery too.

A cystic fibrosis patient may also look to alternative forms of medicine or homeopathic methods to ease the symptoms of this disease. There is a wide range of these therapies available. You should always consult your doctor before using an alternative medicine approach to your disease and do not use an alternate therapy and drop your prescribed therapies. Alternative medicines include maintaining a healthy eating pattern, regular exercise, and reducing stress. Cystic fibrosis patients should also keep a positive attitude and try to keep their stress level at a minimum. Exercise will help reduce stress and anxiety and lift your mood. These are effective in treating any disease including cystic fibrosis. Keeping a positive attitude will help ease symptoms and allow you to have a better quality of life.

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Treatment for Cystic Fibrosis


Treatment for cystic fibrosis will vary for each individual. The severity of symptoms and the organs affected will be different for each patient. There is no known cure for cystic fibrosis. Treatment is to ease the symptoms and give the patient a better quality of life. Treatment also will prolong life. Normal life span for cystic fibrosis patients in the United States is around 36-39. Previously, infants rarely survived and the average life span of a patient with this disease was 16. The life span jumped dramatically when the abnormal gene was identified in 1988.

Technological advances now make it possible for cystic fibrosis patients to live to adulthood, marry, and raise families of their own. The most basic of treatment for cystic fibrosis is to ensure the patient is eating a healthy diet with more calories and vitamin and enzyme supplements. Second they need to ensure their airflow is as unobstructed as possible. Increase airflow to the lungs is an important part of treatment. The thickness and the mucus should be decreased and expelled. Antibiotics should be administered to prevent or treat possible infections in the lungs and bronchial passages.

There are over 115 treatment centers throughout the United States. These centers are unique in that they only treat cystic fibrosis patients. A treatment center will have doctors specifically trained to diagnose and treat cystic fibrosis patients and may also have support systems for patients and families. The Cystic Fibrosis Foundation runs these centers. You may look for the locations of these centers on the Internet or by referral from your doctor.

There are several methods of nondrug treatments that are recommended for cystic fibrosis patients. Because patients with cystic fibrosis often do not absorb enough protein, calories, or vitamins, patients are encouraged to raise their caloric intake and take extra pancreatic enzymes and supplemental vitamins. Scientists and doctors recommend increasing caloric intake by 120-150 percent. Extra protein should be increased in the patients daily diet. It is also a good idea to drink liquids that give supplemental nutrients. There are several bands available at any grocery store or pharmacy.

Patients with cystic fibrosis should be encouraged to live as normally as possible. They should stay active. Physical exercise will help keep the thick mucus from sticking and collecting in the passageways to the important parts of the body. Exercise may not be suitable for some CF patients if their respiratory problems are severe. If you are an adult patient with cystic fibrosis, you should contact your doctor before you start any new exercise routine. A walk around the block is a good start for those who are not used to physical exercise. Exercise will help expand the lungs and increase air capacity.

Patients may also need postural drainage methods to remove the thick secretions from the passageways to the bodys major organs. One method is to just alternate the patients position. Another is by tapping with a cupped hand on the back and chest area to loosen the mucus. A vibrating vest is now available that is used to dislodge the mucus and allow it to be coughed up. Other new innovative devices are being used to put pressure on the lungs to help loosen the mucus and allow it to drain.

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Treating Cystic Fibrosis with Drugs


Various drugs are available to help ease suffering patients with cystic fibrosis. This disease often disrupts the digestive function because of a mutant gene that keeps moving sodium, chloride, and water flowing freely through the body. The mutant gene causes normal secretions of the body to be heavy, thick, and sticky. Healthy people have a pancreas that produces proteins that help break down food. This protein is sent through small channels into the intestines where the food is present. Cystic fibrosis patients often have these small channel blocked by the sticky mucus and not enough of these enzymes get into the intestines. Food is not digested properly and gastric problems are the result. A cystic fibrosis patient may complain of pain, a bloated stomach, diarrhea or bowel blockage, and excessive gas. These patients should be taking oral digestive enzymes to help break down the food they eat. These enzymes are taken before every meal or snack and in a large dose.

Cystic fibrosis is constantly fighting to keep enough airflow to the lungs. This can cause anxiety and create panic situations that make it even harder to take a breath. There are complications that are caused by a lack of oxygen including irritability, short-term memory loss, and mood changes. If a patient with cystic fibrosis does not receive the oxygen it needs vital organs can be seriously affected. Damage can be done to the brain and other organs that need oxygen to play their role in the body. Bronchodilators have been developed to help patients preserve the right amount of airflow and ease breathing difficulties.

Also available to CF patients are inhaled corticosteroids and ibuprofen. Patients who have cystic fibrosis often have inflammation of the lungs. If the inflammation lasts longer than a few days, permanent damage can be done and further aggravate the patients condition. Corticosteroids are natural hormones normally made by the adrenal gland and can be prescribed by a doctor to decrease the severity and frequency of lung infections. Decreasing inflammation can significantly lessen the chances of future lung problems in the cystic fibrosis patient. Ibuprofen can also be used to help limit the severity of lung infections. There are some significant side effects from ibuprofen so you should follow your doctors instructions exactly if ibuprofen is prescribed.

Drugs that thin the mucus can be given to cystic fibrosis patients. If the mucus can be thinned it is much easier to clear the mucus from the lung and air passages. This allows the patient to breathe easier. A drug is available that breaks up the genetic material in the thick mucus and decreases the thickness.

Antibiotics are another tool useful to patients suffering from cystic fibrosis. If a patient gets a lung infection, they are difficult to control and cure. Bacteria that cause these infections are trapped in the sticky secretions and multiply. The mucus can prevent the antibiotics from getting to the source of the infection, making lung infections even more difficult to treat. Antibiotics can now be inhaled or taken as tablets and capsules to help the antibiotics get to the source of the infection.

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Six Tips for Maintaining Your Health With Cystic Fibrosis


Anyone diagnosed with a life-threatening disease should be wise enough to keep as healthy as possible. That means something different for each person and should be tailored to fit your individual lifestyle. There are six tips that help cystic fibrosis patients stay healthy.

Tip Number One: Eat a healthy diet. Be sure your diet includes plenty of fresh fruits and vegetables, fish oils, and lean protein. Cystic fibrosis patients should increase their daily calorie intake. This will ensure your body is getting enough nutrients to thrive. Take a dietary supplement each day. Because cystic fibrosis can affect your bone structure, you should take a calcium supplement and increase your vitamin D consumption. Increasing your exposure to sunlight will help you keep your vitamin D level as high as it should be.

Tip Number Two: Drink plenty of water every day. If you exercise or take part in in sports you will need to drink more. Decaf tea and coffee count as water if you do not add sugar or milk. Cystic fibrosis patients should consume at least half of their body weight. If you weigh 140 pounds, you should drink 70 ounces of water. If you drink the water you should you will avoid dehydration and keep the mucus secretions in your lungs from getting any thicker. This will allow you to breathe easier.

Tip Number Three: Make sure your immunizations are completely up-to-date. Immunizations are important for cystic fibrosis patients to help prevent lung infections. You should have immunizations for Measles, Mumps, Rubella, Diphtheria, Tetanus, Pertussis, and flu and pneumonia. If you have a child with CF, its important to keep their immunization schedule current.

Tip Number Four: You should stay active! You should try to get some form of physical exercise every day. Regular exercise will strengthen your lungs and increase your air capacity. If regular participation in sports is exercise is new for you, always check with your doctor before beginning an exercise routine. Taking a walk each day is helpful. Start out with a walk around the block and increase the distance, as your body is able. Even a slow walk is better than no exercise at all. Taking part in a sport may also increase your confidence and self-esteem.

Tip Number Five: Stop smoking! Stay away from environments that are smoke-filled. Smoking and second-hand smoke can cause added lung problems for a patient with cystic fibrosis. Smoking and second hand smoke are bad for all of us but especially for a child or adult with cystic fibrosis.

Tip Number Six: Practice good hygiene habits. This will limit your exposure to germs and bacteria that can make your disease worse and give you more breathing difficulties. Always wash your hands thoroughly especially after using the rest room and visiting your doctors office. Touching public devices such as elevators, grocery cart handles, and public telephones will mean you will want to wash your hands thoroughly. Carrying a bottle of waterless cleanser can keep you healthier by eliminating germ and bacteria on your hands.

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The Spiritual Side of Cystic Fibrosis Treatment


Being a parent of a child with cystic fibrosis or having the disease you is stressful and frustrating. Because the disease attacks some of the most important organs in our body, patients can stress about their inability to digest their foods, the need for physiotherapy, and the discomfort and pain that comes with the disease. Stress often worsens the symptoms of the disease. A patient already struggling for breath can panic and their stress can make breathing even more difficult.

Is there a spiritual answer for this disease? Many believe in divine healing and that is possible. A strong spiritual life, meditation, prayer, and relaxing activities can help ease the stress of having a disease for which there is no known cure. There are many incidences of prayer by a support group; church family, or spiritual advisor has helped ease the stress a cystic fibrosis patient feels.

Your personal God can help you relieve stress and help you deal with cystic fibrosis.
Meditation and prayer will relax your body. When your body relaxes the major organs the disease affects will also react by relaxing. Yoga and prayer will slow your body and mind and ease breathing problems.

Statistics prove that those who are involved in a spiritual group, attend church on a regular basis, and pray or meditate have better health. Not only do you have the power of your spiritual side, but also you also the support of friends and family who can encourage you and help you cope with the symptoms of your disease. Spirituality will give you peace of mind, encouragement, and allow you to have faith in your future. A spiritual awareness has been proven to prolong life and improve the quality of your life.

Meditation regimes that combine meditation and stretching routines also will slow your mind, calm your spirit and relieve stress. Yoga is a wonderful way to relax, meditate, and calm your spirit. You may not be able to physically perform all of the stances or moves but those that practice yoga report they are calmer, more self-confident, and better able to cope with the stress of life.

A relaxed and stress-free body will allow your lungs to work better, easing tension will relax the airways, and being calm helps keep your breathing passages open. Stress also attacks the intestines and when you are calm, your digestive tract will give you less trouble.

Having a spiritual advisor may also help when you need someone to talk to, discuss concerns with, or need a person who is open to talking to you about your disease and prognosis. It is hard to deal with the fact you have a disease for which there is no known cure. You dont have to go through that alone. Find a support group in your area, find a church home, and spend time in prayer and meditation. All of those actions will help you cope with the disease you have or that is affecting a member of your family.

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The Profile for Cystic Fibrosis


Cystic fibrosis is an inherited disease that occurs when both parents carry the mutant CF gene. It is incurable but new advances are being found each year in finding new methods of treatments. New methods for diagnosing the disease are being discovered as well. The disease causes the normally thin mucus that lines the passageways to major organs to become thick and sticky causing it to build up and cause problems for the patient in breathing and digesting their food. The disease can also affect the liver, bones, and the reproductive organs. The lifespan of a cystic fibrosis patient has risen from 16 years old to somewhere in the middle 30s. Symptoms will vary for each person diagnosed with the disease.

CF is caused by mutations in the cystic fibrosis transmembrane conductance regulator gene. A person can only inherit this disease if both parents are carriers of this mutant gene. Someone may be a carrier of the mutant gene but show no signs of the disease. This carrier may still be able to pass the disease to their children if their partner also carries the mutant gene.

The Cystic Fibrosis Foundation gathered the statistics of people who have cystic fibrosis. They estimate 30,000 Americans, about 20,000 Europeans, and 3,000 Canadians have cystic fibrosis. Strangely enough, if you are a Caucasian who had family originating in Northern Europe, you are more at risk for carrying, having, and passing on the disease. Ethnic groups such as African-Americans, Native Americans, and Asians have a reduced risk of developing cystic fibrosis. The Cystic Fibrosis Foundation estimates there are over twelve million people may have the mutant gene but are unaware they are carriers.

The symptoms of cystic fibrosis do not always follow the same pattern for each patient. It affects each person in a different way and in different degrees. Cystic fibrosis had one basic issue, an abnormality in glands that produce sweat and mucus. Sweat is important to keep the body cool and mucus lines the reproductive, digestive, and respiratory organs preventing them from drying out. The normally thin mucus helps protect these important organs from infections. When the mucus becomes too thick and sticky it lodges in the passageways and are receptors for any infection or bacteria that enters the system.

Cystic fibrosis patients lose an excessive amount of salt in sweat and this upsets the balance of minerals in the blood. This can cause abnormal heart rhythms and shock is another possibility for CF patients.

Thick mucus can result in malnutrition, slow growth rate, frequent respiratory infections, and breathing difficulties. It can lead to permanent lung damage if not treated properly. Lung disease is the main cause of death in cystic fibrosis patients. Other parts of the body may be affected by cystic fibrosis including the sinus cavities where polyps may form and the patient may have frequent sinus infections. The digestive tract may show signs of the disease with discomfort in the stomach, bloating, and excess gas.

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The History of Cystic Fibrosis


Cystic fibrosis was a disease that has been around since the Middle Ages. Many infants with salty skin often died in infancy or young. These babies and children were considered bewitched because they died at such an early age.

The scientist Fanconi first named the disease in medical history when he refers to it as cystic fibrosis with Bronchiectasis. A scientist from Columbia University first developed a complete profile and description of cystic fibrosis symptoms. A profile did not help much with treatment in 1938. It was finally discovered in 1949 that cystic fibrosis was caused by a recessive mutant gene. Diagnosed then as a genetic disease improvements are being made each year in treatments for this incurable disease.

In 1953 the Pediatric Society noticed cystic fibrosis patients suffered from excessive dehydration during a heat wave in New York City. Columbia University discovered cystic fibrosis patients were secreting large amounts of salt in their sweat. This is what led to developing the sweat test to diagnose cystic fibrosis.

More advances were not made until the early 1980s when researchers discovered organ damage caused by cystic fibrosis was caused by the malfunction of the epithelial tissue. In 1989 a pair of scientists discover and isolate the gene responsible for cystic fibrosis. The gene was credited to the chromosome number seven. It is responsible for cystic fibrosis.

Today, in 2007, strides are being made in treatment and early diagnosis of cystic fibrosis but there is still no known cure for the disease. The basic problem with the disease of cystic fibrosis is the same in all patients. The abnormality in the number seven chromosomes affects the glands that produce sweat and mucus. Our bodies need sweat to keep cool but the mutant gene causes excessive loss of salt in the sweat. Mucus is good to have too because it lines important organs in our body keeping them from drying out. Cystic fibrosis causes the patients mucus to become excessively heavy, discolored, and sticky. Mucus sticks to the lining and allows germs, bacteria, and infections to linger and cause severe infections.

Cystic fibrosis normally affects the digestive and respiratory system but is known to affect other organs also. CF causes liver problems, digestive disorders, and can even lead to osteoporosis and bone loss. If a person loses a great deal of salt in their sweat, it can cause abnormal heart rhythms and shock. When the digestive organs are affected, the patient does not process food as they should and the body does not receive enough of the vital nutrients it needs.

Patients with cystic fibrosis should take steps to maintain good health including eating healthy foods, staying active, and avoiding smoking or being in a smoky place. Cystic fibrosis patients already have problems with breathing and smoking further complicates an already incurable disease. Staying active will help keep the thick mucus loosened so it can be expelled from the body. Patients may also want to take supplements because the digestive system has problems digesting foods.

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Signs and Symptoms of Cystic Fibrosis


Cystic fibrosis is a disorder that causes severe lung damage and digestive problems that could result in malnutrition. The disease is inherited when both parents carry a recessive mutant gene. A child cannot inherit cystic fibrosis if only one parent carries the mutant gene. There is no known cure for this disease. Life span for cystic fibrosis patients have increased by nearly 25 years since the disease was first diagnosed.

Cystic fibrosis affects the cells that produce sweat and mucus. Both of these are important to the body. Sweat helps cool our body, and mucus keeps our essential organs lubricated so they can work properly. Mucus is thin and watery in healthy patients but in those with cystic fibrosis the mucus is thick, discolored, and sticky. Mucus plugs essential passageways to the respiratory, digestive, and reproductive system allowing infection to pile up. The treatments for cystic fibrosis patients are aimed at preventing complications, relieving symptoms, and improving the quality of life.

Specific signs and symptoms will vary from person to person. The basic problem for every patient is the thick mucus; symptoms can vary from patient to patient. Symptoms will vary in the degree of the severity for each person. One child may have respiratory problems that suggest they have cystic fibrosis while another may have severe digestive disorders. Some cystic fibrosis patients may not be diagnosed until they have a delay in the onset of puberty. Occasionally a patient may be a young adult before they are diagnosed but this is rare.

A child with cystic fibrosis may be malnourished and their growth could be slowed. If the disease affects their digestive tract, foods are not digest properly and essential nutrients do not get sent to other areas of the body. An infant may be diagnosed with cystic fibrosis early in life if they suffer from an intestinal blockage. This happens when meconium, which is normally passed out of the body a day or two after birth, instead backs up and blocks the intestines. Meconium is a substance that is naturally expelled through the bowels and shows as greenish black stools.

Other signs in an infant or young child is failure to grow, thick and greasy stools, frequent respiratory infections, bloating and excessive gas. A child may taste salty when they are kissed. Patients with cystic fibrosis have a higher than normal amount of salt in their sweat. Older children who have blocked bowels, greasy and smelly stools should also be tested for cystic fibrosis. Wheezing and coughing that brings up heavy colored mucus is another sign of cystic fibrosis. A child may also have part of the rectum protrude from the rectum caused by stools that are too thick to pass or frequent coughing.

An unusual but common sign of cystic fibrosis is enlargement of the fingertips and toes. Known as clubbing, it is a symptom for CF but can also occur in people with heart problems and other lung diseases. If your child shows any of these signs, call your doctor and have them examined and tested.

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