PARENTAL SUPPORT
First Steps for Managing Cystic Fibrosis Diagnosis By Dr. Ronald I. Malcolm, EdD CYSTIC FIBROSIS IS A PROGRESSIVE GENETIC DISORDER INHERITED BY A CHILD FROM BOTH PARENTS. EACH PARENT MUST HAVE ONE COPY OF A DEFECTIVE CYSTIC FIBROSIS GENE, SO THE CHILD INHERITS BOTH COPIES OF THE DEFECTIVE GENE. WHILE THIS DISORDER IS WIDELY KNOWN FOR AFFECTING A CHILD’S LUNGS, IT CAN ALSO HAVE ADVERSE EFFECTS ON THEIR DIGESTIVE SYSTEM AND OTHER ORGANS. GENERALLY, IT WILL CAUSE A THICK MUCUS TO BUILD UP WITHIN THE LUNGS, WHICH CAN LEAD TO LIFETHREATENING INFECTIONS. So, what is the best way for you to assist your child with managing their cystic fibrosis? Here are 10 simple suggestions for assisting your child. 1. Educate yourself As a parent with a child who has cystic fibrosis, it is essential you begin to educate yourself as much as possible on your child’s health condition. As your child grows, you will both encounter many “well-meaning” individuals who may not fully understand your child’s medical situation.
Many people will simply look at your child and state, “They look healthy to me.” The more educated you become on cystic fibrosis, the better you will become at guiding your child through this journey and educating others effectively on your child’s needs. Your primary physician may be able to offer you some great resources to read. Your community may host sponsored support groups where you can also obtain valuable information. Check out the Cystic Fibrosis Foundation and
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