People with cystic fibrosis are at risk for two common bone diseases: osteoporosis (ostea-o-pour-o-sis) and osteopenia (ostea-o-pea-knee-a).
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There are many reasons why people with cystic fibrosis get osteoporosis or osteopenia. It is important to remember that nutrition, lung disease and bone health are related. When people do not feel well, they eat less and they exercise less.
A high-calorie, nutrient-dense diet and exercise leads to healthy, strong bones for people with cystic fibrosis. Good nutrition also means taking vitamin and mineral supplements and sometimes medication.
Just as the lungs produce thick, sticky mucus, the pancreas also makes thick mucus that blocks the release of enzymes needed for digestion. Most people with cystic fibrosis need to take enzymes before they eat.
Phthalates (pronounced “THA-lates”) are a group of chemicals used in many products, including drugs, medical supplies, toys, vinyl flooring, wall covering, detergents, lubricating oils, food packaging, cosmetics, and personal care products like soaps and shampoos.
Taking the right medications not only helps you meet your nutrition goals but also it prevents you from harming your health.
Managing your daily life so that you don't miss your treatments while also taking in enough calories to maintain a healthy weight is not easy. You're not expected to do it alone. Your cystic fibrosis care team is there to help you.
Tube feeding can be a great way to get the calories and nutrients that you or your child with cystic fibrosis need to gain and maintain a healthy weight. Far from a “last resort,” tube feeds can also relieve the stress of mealtime.
You will work with your cystic fibrosis care team to make a schedule that works best for you, whether that is between meals, all day or overnight.
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