作为父母，您想为您的孩子提供最好的生活。但是当他们被诊断出患有威胁生命的疾病时cystic fibrosis (CF), you may worry about their future.
What is cystic fibrosis?
CF is a lifelong illness that causes mucus inside your sinuses and airways to become thick and sticky. With this condition, the mucus builds up and clogs those passages and can lead to chronic infection with serious breathing problems and progressive lung disease. CF impacts many different systems, but often there are also issues with digestion, malnutrition and生长和发展。
虽然没有治愈CF,亿旺资讯公司es in treatment have extended both life expectancy and quality of life for those living with the disease.
“家庭经常意识到90年代初期的'旧CF'，当时生存中位数比现在有意义的低。”Wayne Morgan，医学博士，Banner Health的儿科肺科医生主頁(欢迎您)Diamond Children’s Multispecialty Services Clinicand the University of Arizona Pediatric Pulmonary Center.
“得益于新的治疗疗法和改善的护理，我们的大多数患者都做得更好，生活到40多岁，甚至更长的时间 - 这仍然远远低于我们的目标，但比30年前要好得多。”
父母应该知道的五件事
即使知道所有治疗方面的进步，学习您的孩子的CF仍然令人恐惧，毫无疑问，您也有很多问题和疑虑。对患有CF的孩子有多么困难感到不知所措，但是您可以学会为孩子做更多的事情。摩根博士分享了父母在对孩子的待遇和照顾方面应该知道的五件事。
1. You aren’t alone. Comprehensive care plays an important role in your child’s treatment and safety.
Your child’s CF is highly complex and individual. The key to their progress in health and well-being is when their care is done in partnership with a highly specialized, multidisciplinary team at a Cystic Fibrosis Foundation-accredited center.
At these centers, you, your child and your family are guided every step of the way by experts and specialists in the field, including doctors, nurses, dietitians, pharmacologists, psychologists, social workers and respiratory therapists.
当您第一次见面时，您的团队将介绍该疾病的基础知识，解决初始疗法，压力营养和护理。“我们一开始就尽量不要让家庭过多信息压倒家庭，但我们确实强调我们在这里回答问题，没有愚蠢的问题，重要的是，我们希望他们再次提出相同的问题。”。摩根说。“ CF临床团队努力开发建立信任并开放的家庭伙伴关系，以制定现实，最佳的治疗计划。”
CF is a lot of work and it can be disruptive to your life and your child’s life, but with proper care and treatment, you can manage it. To find a comprehensive CF care center, visitcff.org通过您的邮政编码进行搜索。
2. Nutrition and exercise are important.
Regular physical activity and good nutrition are important—especially when you have CF.
Exercise has many benefits. It can help loosen mucus and improve oxygen flow, which can make your child feel better. Exercises like swimming can also help increase their strength and endurance that are used for breathing. Your doctor can let you know what kinds of exercises will be good for your child.
Good nutrition is different for a child with CF. Your child will have a diet that is high in calories and fat, which will help your child gain and keep weight and energy. They will also take vitamins, mineral and enzyme supplements and may receive tube feeding. Their dietitian can help you plan meals.
3.治疗疗法不再是一定程度的。
Today, people with CF are living longer and more fulfilling lives thanks, in part, to specialized CF care and a range of treatment options. In addition to nutrition and exercise, there are a number of medications that help clear the thick and sticky mucus from airways and reduce inflammation. There’s also antibiotics to treat CF lung infections and emerging therapies that target and correct the defective protein made by the CFTR (cystic fibrosis transmembrane conductance regulator) gene.
“在这个时代，由于突变类型的变化，孩子的突变都会影响预后，但更重要的是，大约90％的具有F508DEL突变的CF的人将能够接受Trikafta，这是一种新的摩根博士说：“结合医学非常有效，应该在实质上扩大生存，并且重要的是改善生活质量。”“对于无法对高效调节剂疗法做出反应的非F508DEL或其他突变，我们仍然很乐观，CF基金会正在对研究进行大量投资，以寻找治疗方法。”
如果您不知道孩子的突变，请向他们的医生询问专门的基因测试。
4. Your child can live a “normal” life.
当您的孩子与重症疾病作斗争时，您可能有想要保护他们的趋势，但是成为一个活跃和“正常的孩子”可以帮助他们保持健康。许多患有CF的孩子长大，运动，上大学，结婚并有家庭。他们有时可能会挣扎，但在那里以积极的态度支持和指导他们可以帮助您的孩子学习和成长。
5.也要照顾好自己。
Practice self-care. Being a CF parent is hard. Parents of children with CF are more likely to experienceanxiety, depression or both。这可能会令人筋疲力尽，令人沮丧和恐怖，可以为自己暂停并寻求支持是可以的。
与您的孩子的护理团队，您的医生或behavioral health specialist谁可以与您合作减轻压力的方法，焦虑和/或抑郁。您也可以加入支持小组。与面临类似挑战的其他父母分享您的经验可能会帮助您感到不知所措。
Outlook
Learning how to care for your child with CF can be scary at first but remember you’re not alone. The outlook for those with CF has improved dramatically over the years, thanks to the advancements in treatment and comprehensive care. If your child has recently been diagnosed with CF and you have questions about their treatment and care, find a CF care center near you, or contact apulmonary specialistat Banner Health.
