Health Happens: A Team Effort
One of the greatest lessons learned in raising a child with cystic fibrosis is the realization that you are not in this by yourself. For most parents, that overwhelming sense of solitude begins to fade the moment they walk into a Cystic Fibrosis Foundation-accredited care center and meet the medical team.
The center of your universe
The Cystic Fibrosis Foundation accredits more than 115 cystic fibrosis care centers, pediatric and adult programs, worldwide. Working within each center is a team of health care professionals who specialize in CF -- doctors, nurses, nutritionists, pulmonologists, gastroenterologists and psychosocial specialists. They are ready to walk this journey with you and your family.
The National Institutes of Health credit the remarkable advances made in the life expectancy of cystic fibrosis patients over the last few decades, in large part, to the effectiveness of these centers. The center's medical professionals offer cutting-edge care and become an extended network of support in your life, providing that intangible medicine that is key to anyone living with CF -- hope.
Center professionals also collect information from the patients they see and share that data in a national patient registry. Care providers and researchers around the world then use the registry to advance their understanding and treatment of the condition.
An ounce of prevention
If you are a caregiver for someone with CF, you know about the power of good nutrition, daily exercise and a firm commitment to treatment. Over the years, children need to be taught the how and why of these important elements in order to achieve optimal growth. Adults with CF still need to be reminded, and sometimes prodded, to do the right thing when it comes to diet, treatments and exercise.
Good nutritional counseling can help; particularly since diet and lung health are closely linked. A CF patient's health depends on a high-calorie, high-fat diet, but what is the best way to get that? Your clinic dietitian will help you create a successful nutritional plan that changes as your child or your partner's needs change.
Say “Yes” to treatment
You are raising children, going to doctor's appointments, filling prescriptions, performing physical therapy on your child and phoning the CF clinic when you're not sitting in its waiting room. It's an exhaustive routine, but you remain diligent about treatment because you know how essential it is to your child's survival.
Compliance with daily treatments is of utmost importance to people with CF. Helping patients understand that they have some control over their health through their commitment to treatment can be key to inspiring compliance in both children and adults.
Non-compliance is an issue that many CF families face, particularly as children enter their teen years, yearn to fit in with their peers, and find it hard to believe that poor choices made today can cost years down the road. Your CF medical team is your best ally during this time, having the experience to guide families through these tumultuous years.
Ready, set, exercise!
Giving your lungs a good workout helps make any body strong. For someone with CF, a cardiovascular routine can also act as natural chest physiotherapy, helping to loosen mucus and promote coughing.
Exercise is child's play for the littlest CF patients. A half hour in the back yard may include running, jumping and a serious game of hopscotch — just the kind of activity important to the health of your child's lungs.
Adult patients can find cardiovascular and lung health in playtime, too. A heated tennis match, a scenic bicycle ride or an in-line skate through the park put the fun back into daily exercise and contribute to healthier lungs.
The great communicator
Since cystic fibrosis is often a mystery to those not living with the condition, (how many times have you been asked, “Is that anything like MS?”), good health sometimes depends on your ability to communicate your child or your partner's needs to friends, family and teachers.
For instance, letting your child's teacher know that colds and coughs in the classroom can send your son or daughter to the hospital is important. The teacher might then send out a letter to fellow parents asking them to be more diligent about keeping sick children at home. Keeping quiet about your child or your partner's cystic fibrosis can be dangerous to their health. Inform and educate those people orbiting your family planet.
The best health happens when you and your family are proactive about visiting the doctor, eating well, exercising and staying on top of treatments. Let love be your motivator, friends and family be your extra hands, and the medical team at clinic be your partners in good health.